Overcoming barriers in ARTadherence
The role of social support and counselling
in antiretroviral treatment in Kayunga, Uganda
Marianne Cornet
Master Medical Anthropology and Sociology, University of Amsterdam
Supervisor: Dr. Winny Koster
January 2008
Cover photo: The gate of Kayunga Hospital.
2
Table of contents
Summary
5
Acknowledgements
List of acronyms
6
7
Chapter 1 Introduction 8
Problem statement
Research objective and questions
The structure of this thesis
Chapter 2 Literature review and theoretical concepts 13
AIDS in Uganda
Antiretroviral treatment
Variables influencing ART-adherence
Theory and concepts on ART
Chapter 3 Methodology 25
Study type
Study location Kayunga
Study populations
Data collection and analysis techniques
Study limitation
Ethical considerations
Chapter 4 ART provision, adherence and counselling in Kayunga Hospital
33
ART provision
Adherence to ART
ART counselling
Chapter 5 Social Support
50
ART related costs and needs
Disclosure of HIV-status
Social support
Chapter 6 Counselling, social support and adherence; conclusions
and recommendations 67
Counselling, strengthening social support and adherence
ART-adherence and anthropological concepts
3
Recommendations for better ART-adherence
References 76
Annexes
80
1 Problem analysis diagram
2 Background characteristics informants
3 Data collection tools
4
Summary
This thesis is the account of my study on adherence to AntiRetroviral Treatment (ART) by
People Living With HIV/AIDS (PLWHA) in Kayunga Hospital in Uganda. The focus was on
the role of counselling and social support in treatment adherence. For ART to work
effectively and to avoid a resistant virus, adherence to ARV (AntiRetroViral) treatment
should be 95% of doses or more (Barnett & Whiteside 2006:49). In reality, this is hard to
achieve. Counselling and social support are mentioned to be key variables at work here,
influencing adherence rates positively (Gill 2005).
The purpose of this research was to gain knowledge about the local reality of
adherence to ARVs, counselling and social support in order to make recommendations on
how to optimize adherence to ART. The question leading this study is: In what ways can
counselling positively influence some forms of social support for PLWHA?
People living with HIV/AIDS on antiretroviral treatment at Kayunga Hospital and the
staff of the HIV-clinic were interviewed. I mainly used ethnographic research methods and in
addition I held a survey. Although it is possible to openly discuss HIV and AIDS in Uganda,
there is still stigma. For ethical reasons individual PLHWA should be protected from stigma
and therefore the anonymity of the informants was guarded. Furthermore, informed consent
was acquired before each interview.
In Kayunga hospital free antiretroviral treatment and free drugs for opportunistic
infections are provided in combination with individual counselling at the HIV-clinic. The
ARV-adherence of HIV-positive people in Kayunga is high and the motivation for this was
found in the availability of adequate counselling and social support. Social support includes
mental, financial and practical forms of help like encouragement, financial assistance and care
of mostly family and friends. Social support motivates people to adhere to ART and helps
them in getting the means to do so. Professional counselling of HIV-positive people on ART
can increase their social support. In Kayunga counsellors achieve this by stimulating their
clients to disclose their HIV-status, involving treatment supporters in their treatment and
informing their clients on organisations and peer-groups they can join. They also sensitize
communities on HIV, ART and the needs of PLWHA. This approach of Kayunga hospital
sets a good example for other ART projects.
5
Acknowledgements
I would like to use this opportunity to thank the following persons for their various forms of
support during the preparation, execution and reporting phases of my research in Kayunga:
Winny Koster (University of Amsterdam) for her clear advice, inspiration and flexibility,
especially while guiding me in writing my thesis. Els Klinkert (Netherlands Ministry of
Foreign Affairs/IS Academy) for her advice in the start of the project. Achilles Ssewaya
(Amsterdam School of Social Research/ Makerere University), for sharing his research
experiences and findings with me and for his warm hospitality. Ahmed Matovu (Kayunga
hospital) for opening the hospital doors with great generosity and arranging complete access
to all ART-related persons and areas. My gratitude goes to the HIV-clinic staff for sharing
their experiences and opinions, for their friendly cooperation and their great sense of humour
during my participant observation. I also would like to thank the 60 people living with HIV
on ART who entrusted me with their experiences, thoughts and life stories: weebale nyo! I
would like to thank my two research assistants, Allen Nawanga and ‘Lindsay’, for their great
company and enthusiastic help. Without their interpreting of Luganda, I would never have
been able to carry out all of my interviews. Furthermore I would like to thank my fellow
student Marion de Boer for the numerous insightful discussions and for letting me have a
peek in her own field work. Moreover, I would like to thank Linette Belo for introducing me
to some NGO’s working on HIV-related issues in Uganda. Last but not least I thank Mirte
and Jonatan van Dijk, Marianne and Rob Cornet, Charlotte Grimbergen, Marnix van den
Bergh and Imke Beenders for helping me finish this project.
6
List of acronyms
ACP
AIDS Control Program
AIC
Ugandan AIDS Information Centres
AIDS
Acquired Immune Deficiency Syndrome
ART
AntiRetroviral Therapy
ARV
AntiRetroViral drugs
ASSR
Amsterdam School for Social Science Research
CAI
Child Advocacy International
CD4
CD4 T-cell
HAART
Highly Active Anti-Retroviral Therapy
HIV
Humane Immunodeficiency Virus
IS Academy International Cooperation Academy: The Netherlands Ministry of
Foreign Affairs and the ASSR
MoH
The Ugandan Ministry of Health
MRC
Medical Research Counsel
MSF
Médecins Sans Frontières
MUWRP
Makerere University Walter Reed Project
NGO
Non-Governmental Organisation
OI
Opportunistic Infection
PEPFAR
The United States President’s Emergency program for AIDS Relief
PLWHA
People Living With HIV/AIDS
PMTCT
Prevention of Mother To Child Transmission
TASO
The AIDS Support Organisation
TS
Treatment Supporter
UAC
Uganda AIDS Commission
UNAIDS
United Nations joint programme on AIDS
Ush
Ugandan shillings
US$
United States Dollars
UvA
University of Amsterdam
VCT
Voluntary Testing and Counselling
WHO
World Health Organisation
7
Chapter 1: Introduction
At the 2001 United Nations General Assembly on HIV and AIDS, 189 nations signed the
Declaration of Commitment by which the AIDS epidemic was identified as a worldwide
disaster that needed to be stopped with collective action (UNAIDS 2006). An estimated 1.1
million people are living with HIV or AIDS in Uganda, a fact to which the Ugandan Ministry
of Health is responding by increasing ART (AntiRetroviral Treatment) provision, intending to
enrol at least 100,000 PLWHA (people living with HIV/AIDS) in ART in 2007 (Wanyenze et
al. 2006). In June 2006 an estimated 48% of the Ugandan HIV-positive persons needing
ARV-treatment was actually reached by these programmes (Larsson et al. 2007:886). HIVcounselling is generally recognized as a valuable part of effective treatment, but Ugandan
health care facilities often lack the capacity to counsel and treat clients optimally (Larsson et
al. 2007).
During my fieldwork in Kayunga, Uganda, I studied the ART and counselling
provision at Kayunga Hospital, the adherence of the clients on ARVs and social support
received by these people. I subsequently studied the influence of counselling on social support
and how social support affects adherence. The findings of the study are described in this
report.
This study1 is closely linked to Achilles Ssewaya’s PHD project of the ASSR (UvA)
and Makerere University. Ssewaya conducts research in Kayunga Hospital and Mbuya Reach
Out. His study focuses on identifying characteristics and barriers in adherence to ART in
Uganda (ASSR 2007). Preliminary results of Ssewaya's fieldwork indicate that social support
plays an important role at the initiation, execution and continuity of ARV-treatment. The
subject of individual social support was beyond the focus of his already extensive research. I
went to Kayunga too and focused my research on individual social support as a means for
PLWHA to conquer barriers in adherence. This study, for a large part carried out at a microlevel, supplements Ssewaya’s work on adherence barriers on a meso-level.
1
My study is part of the Master Medical Anthropology and Sociology of the University of Amsterdam and is
executed under the umbrella of the IS-Academy HIV/AIDS and the Netherlands Ministry of Foreign affairs.
8
Problem statement
People on ART need counselling to achieve optimal adherence (Gill 2005; Weidle et al.
2006:1587). Consistent treatment adherence is not only important for the length and quality of
the life of the client, but it is also important for the prevention of the development of a drug
resistant HIV-virus. A resistant virus would have to be treated with second-line ARVs, which
are more expensive. Instead of 132 US$ a year for first line drugs (MSF 2006), second line
ARVs cost 447 US$ a year (Clinton Foundation 2006). This means that, with a limited budget
like that of many current projects, there could be a decrease in the number of clients that
could be treated (Hardon et al. 2006:X). Adherence rates of 95% of doses and higher are
necessary (Barnett & Whiteside 2006:49), but in reality lower adherence has been assessed in
Uganda (Weidle et al. 2006). It is vital to know what influences ART-adherence positively
and negatively. With this knowledge efforts to enhance positive influences can be undertaken
while negative influences can be played down, in an effort to achieve optimal adherence.
Studies on ART in Africa reported that 68% to 99% of people on ARVs took at least
95% of their pills. Those levels are high and similar to developed countries (Ivers et al. 2005),
but it is too early to draw conclusions here, especially because of the difficulty attaining the
exact adherence figures and the fact that adherence tends to weaken over time (Gill 2005).
Weidle et al. state that rural Africans living in poverty with limited health services have
difficulties with adherence to antiretroviral drugs. Pills need to be taken at specific times and
costs are involved when those pills have to be picked up at remote clinics. Still their research
found good adherence to ART in a home-based AIDS-care programme in rural Uganda
(Weidle et al. 2006). A recent study on adherence to ARVs in Kampala showed that 82% of
the clients had taken all their pills that they were supposed to take in the last two weeks. The
methods used to establish this were structured interviewing and laboratory assessment
including viral load testing and CD4-cell count (Spacek 2006). This study suggests that ARTadherence in Uganda is not ideal. Contrary to this finding, Crane et al. (2006) report that
recent studies in Uganda have revealed near-perfect adherence to free ARVs, suggesting that
optimal ART provision services lead to good ART-adherence.
Missed doses may be more due to a failure to access medication rather than a
failure to adhere to medications and structural rather that behavioural
interventions may be most useful to insure optimal treatment response (Crane
2006: 437).
9
Most of these studies were done in urban areas, within a limited period. It is not certain what
adherence will be like on the long term in rural circumstances.
I agree with Crane that availability and accessibility to care in Uganda are indeed
crucial to adherence, but social barriers like stigma and lack of social support must not be left
out of the analysis. A person’s non-adherence to ARVs depends on numerous personal
variables such as youth and low education level (Jones et al. 1999; Catz et al. 1999), but also
economic variables such as food scarcity, high treatment related costs and a great distance
from a client’s home to the clinic may form barriers (Hardon et al. 2006; Katabira 2002).
Social variables like the non-disclosure of a clients’ HIV-status, stigma and lack of social
support can lower adherence too (UNAIDS 2006; Hardon et al. 2006). Treatment related
variables like the troublesome drug regimen, side-effects, treatment dependency, interrupted
drug supplies and treatment fatigue might form barriers, just like limited health facility
resources and client-unfriendly conditions (Jones et al. 1999; Hardon et al. 2006). Disease
related variables such as a weak physical state of the client and depression can influence
adherence, just like conflicting beliefs, knowledge and information sources (UNAIDS 2004;
Hardon et al. 2006). These variables form the context of ART-adherence of Ugandan
PLWHA; they are also reflected in the problem analysis diagram in the first annex. Of the
variables just mentioned I have mainly focused on social support and counselling during my
study.
Counselling is crucial for the adherence of a client on ARVs. In counselling sessions
information can be given on how the treatment of HIV can be implemented optimally and the
reasons for the importance of good adherence can be explained. Moreover, PLWHA can
discuss their experiences with taking ARVs, get emotional support and ask questions that
have come up along the way (Hardon et al. 2006:119). However, receiving good counselling
is not the only reason for good adherence; another important variable is social support. I
assume that social support improves the ART-adherence of HIV-positive persons. Social
support refers to all kinds of help from persons and institutions in one’s environment. The
disclosure of the HIV-status is a precondition for social support and a non-stigmatizing
response to the disclosure by someone’s direct environment is the ideal starting point for
social support. Both counselling and social support are known to be facilitators for good
adherence, but the link between counselling and social support was unknown. In this thesis I
will explain how counselling can positively influence some forms of social support needed by
HIV-positive persons on ART.
10
Research objective and questions
The growing availability of ARVs, the risk of drug-resistant viral strains and the stigma that
surrounds HIV and AIDS are matters that highlight the importance of counselling and social
support for PLWHA. In practice it is not always the case that HIV-positive persons get the
support they require and that can have dramatic results for their individual adherence to ART
and quality of their lives (Hardon et al. 2006). This research on a local level gained
knowledge about adherence, counselling and social support in practice. It took place at a
meso-micro level in a limited period of six months among people enrolled in ART at
Kayunga Hospital.
The project was carried out from the perspective of applied medical anthropology; the
relevance of the research results to the actual situation in the region is high. The formulated
recommendations should be practicable so that existing programmes can work more
effectively.
My main research question is: How can counselling positively influence some forms of
social support for HIV-positive persons on ART in Kayunga Hospital? The following subquestions are:
1. How is ART provided in Kayunga hospital and what kinds of counselling do PLWHA
receive?
2. What are the estimated adherence rates of PLWHA on ARVs at Kayunga Hospital?
3. What kinds of social support do PLWHA on ART need and receive?
4. How do different forms of social support influence the adherence of PLWHA to ART?
The structure of this thesis
This report is constructed as following: the second chapter discusses the literature on ART in
Uganda; here I will describe the AIDS epidemic in Uganda and the up-scaling in counselling
and ART that followed. Following this I will discuss theoretical concepts and variables that
influence adherence to antiretroviral treatment. The literature review will be followed by
chapter three on the research methodology and in chapters four and five I will present the
empirical data to answer the question how ART is provided in Kayunga and what kind of
counselling and social support PLWHA receive. In chapter six the empirical data and the
theoretical outline come together to demonstrate how social support influences ARTadherence. In this chapter conclusions are drawn on how counselling influences social
11
support. I will finish that chapter with recommendations for existing ART programmes to
optimize ART-adherence.
12
Chapter 2: Literature review and theoretical concepts
In the eighties HIV spread suddenly and rapidly through Uganda. The quick and wide
response to it with preventative measures brought the epidemic to a halt and now treatment is
offered to some of the infected persons. Variables influencing the treatment adherence of
PLWHA and theoretical concepts explaining them will be discussed in this chapter.
AIDS in Uganda
When in 1983 a research team of the Ugandan Ministry of Health (MoH) concluded that
AIDS had caused the mysterious deaths in a Lake Victoria fishing village, the first official
Ugandan AIDS victims were documented (Kaleeba et al. 2000). From that period on HIV
expanded rapidly throughout Uganda until the point that Uganda had the highest HIVprevalence rate in the world in the early 1990s (Wanyenze et al. 2006; UNAIDS 2007).
Trends vary in the Ugandan epidemic: the HIV-prevalence rate in Kampala was 11% in 1985,
then it raised to an estimated 31% in 1990 and it came down to 8.3% in 2002 (UNAIDS
2007). The HIV-prevalence rate in 2006 was highest in urban regions (10%) and lowest in
rural areas (5.7%). The prevalence rate among women was higher (7.5%) than that of men
(5.0%) (UNAIDS 2007:23). The decrease of HIV-prevalence rates occurred in the context of
significant behaviour change including sexual abstinence and condom use during casual sex
and increased AIDS mortality (UNAIDS 2006). The in 2006 reported estimated national
prevalence was 6.7% (UNAIDS 2007). UNAIDS estimated that in 2006 about 1.1 million
Ugandan people lived with HIV and AIDS (Wanyenze et al. 2006; UNAIDS 2006).
Both international and national projects on AIDS were launched in Uganda, at first
mostly in preventive campaigns. In 1985 the Ugandan government established the National
Committee for the Prevention of AIDS. President Museveni launched a campaign in 1986,
stating that avoiding AIDS was a patriotic duty. In the same year the Ugandan minister of
Health asked support from the international community in dealing with AIDS. As a result, the
AIDS Control Program (ACP) was started in collaboration with the WHO. In 1987 the
Uganda Red Cross started HIV-control activities too (World Bank 2005). These projects show
13
that there has been an early and relatively broad (inter-) national response to the Ugandan
AIDS issue, a trend that has been continued throughout the years2.
In Kayunga government initiatives attack HIV and AIDS too. The Kayunga Referral
Hospital is the only governmental hospital of the district, (Kayunga District 2007a) and
functions as a head-office for Voluntary Counselling and Testing (VCT) services since 2000
(Kayunga District 2007b).
Antiretroviral treatment
Despite the preventative campaigns people continued to be newly infected with HIV. Persons
diagnosed with HIV are first advised to live positively: to eat well and avoid harmful habits
such as smoking, drinking alcohol and unsafe sex. Still, at a certain point their immune
system will fail, meaning that HIV has progressed into AIDS. In this stage opportunistic
infections can easily be caught and should be treated. As the immune system further
deteriorates and tests indicate that the CD4-count3 has dropped to 200-350, ART can be
provided (Barnett & Whiteside 2006:34). With HAART (highly active anti-retroviral therapy)
people would feel better, have fewer infections and be less infectious. For effective treatment
a combination of three drugs is needed and they must be taken for life (Barnett & Whiteside
2006:48).
The drugs used to treat people with AIDS, ARVs, became available in developed
countries and for worldwide elites in 1992. Much later, around 2003, developing countries,
like many in sub-Saharan Africa, gained access (World Bank 2005). However, not all people
in need of treatment have access to it. Just over 17% of the 4.7 million African HIV-positive
people in need of ART were receiving antiretroviral treatment in 2007 (Larsson 2007). The
costs of treatment are among the limiting factors here. According to Médecins Sans
Frontières, treatment expenses have been lowered due to the competition between several
producers of ARVs and the production of generic medicines. Treating a HIV-positive person
2
The Ugandan MoH organised the Medical Research Council, Uganda AIDS Control Project and the Uganda
AIDS Commission. These are financially aided by UNAIDS, the WHO, the Global Fund to Fight AIDS, TB and
Malaria (since 2001), the World Bank, the World Health Organisation, the European Union and many bilateral
donors (MoH 2005; UACS 2001). Through PEPFAR (United States President’s Emergency program for AIDS
Relief), USAID also collaborates with the Ugandan government, religious institutions and community-based
organisations to fight AIDS. Oxfam, the AIDS Support Organisation (TASO), Alliance (a global partnership of
nationally based organisations to support community action on AIDS), the Ugandan AIDS Information Centres
(AIC) and others started projects to halt the epidemic.
3
CD4-cells are part of the human immune system; a healthy person has a count of 500-1.600 CD4-cells per
micro litre of blood (Barnett & Whiteside 2006:34).
14
for one year with first line ARVs now costs US$ 132 (MSF 2006). The prices for tests
assessing and monitoring the viral load, CD4-count and drug resistance were US$100 per
person per year in 2005 (MSF 2005). Still costs remain high for average African PLWHA,
unless treatment is provided for free. In Uganda ARV-therapy was officially integrated in the
MoH National Program for Comprehensive HIV/AIDS Care and Support in 2001, while most
African countries started creating general access only in 2003 (World Bank 2005). The MoH
AIDS Control Programme furthermore developed procedures to ensure quality of treatment
while expanding ART services and training health workers to provide ARV-therapy and
counselling (Katabira et al., 2003; WHO 2003:5). Free or subsidized ART was provided by
85 medical centres, reaching about 40.000 PLWHA in 2005 (MoH 2005) and 80.000 people
in 2006 (Larsson 2007:8). Still 85.000 PLWHA, more than half of the Ugandans needing
ART, had no access to ART in 2006.
Even when PLWHA in need of ARVs manage to receive this treatment, the
background of these people and the context of their lives also potentially create barriers for
good treatment adherence. Their potential adherence to ART depends on numerous variables,
the main factors will be discussed next.
Variables influencing ART access and adherence
Individual, socio-cultural, disease and therapy related variables
There are many variables known from literature limiting access to ARVs and adherence to
therapy, as I mentioned earlier in the problem statement. In general, some variables
concerning the individual PLWHA can be age, as adherence tends to increase with age;
adolescence can limit a person’s adherence to ART (Jones et al. 1999). In their study in
Uganda, Hardon et al. found no correlation between gender and ART-adherence: women do
not seem to adhere to ART differently than men (Hardon et al. 2006:80). According to Catz et
al. (1999) a higher education level is associated with good ART access and adherence, while a
lower level of education may correlate with a lower adherence rate. Socio-cultural variables
are stigma, social support, knowledge and disclosure. According to Wenger et al. (1999)
knowledge about HIV and the benefits of ART can be decisive in accessing ART and
successfully adhere to it in general. Ideas about the toxicity of ARVs and the advantages of
traditional medicine can make PLWHA decide to stop their ART. Persons who disclose their
status to their closest family members and friends have higher adherence rates because they
do not have to hide their treatment and can even be helped in it.
15
Some of the known disease and therapy related variables influencing adherence to
ARVs in Uganda are the demanding drug regimen, the side-effects of ARVs, the physical and
mental health of the HIV-positive person and general treatment fatigue. The three-drug
combination to be taken twice a day, the quantity and size of the pills can make adherence
difficult (Hardon et al. 2006). Side-effects, including nausea, skin rash, frightening dreams
and dizziness, can make Ugandan PLWHA reluctant to continue taking their ARVs (Hardon
et al. 2006). In general, the stage of the disease, opportunistic infections, symptom severity
and CD4-counts that keep lingering around 300 are variables influencing adherence too
(Jones et al. 1999). HIV-positive people tend to get depressed more often (UNAIDS 2004)
and depression is a predictor of low adherence (Hirschorn et al. 1998). ARVs are to be taken
for life and yet they do not cure AIDS (Hardon et al. 2006), which may lower the motivation
for the adherence of some Ugandan PLWHA.
Young, depressed HIV-positive people with a low education level who do not disclose
their status have, according to these studies, a hard time properly sticking to ART. The
adherence of HIV-positive people who feel healthy and do not experience side-effects is
supposedly better than that of people with ideas of ART that conflict with health worker’s
instructions.
Health service related variables
Health service related variables influencing access and adherence to ART are the distance to
the clinic, the sustainability of treatment, information sources and health facility resources and
conditions. The bigger the distance of Ugandan PLWHA homes or work places to the clinic,
the higher the affected costs in time and transport and the bigger the obstacle for ARTadherence. Anxiety on the availability of ARVs can lower adherence too, therefore ARVs
should be available and affordable in health facilities during the lifetime of HIV-positive
people.
The health facilities in Kayunga have a chronic shortage of trained staff and drug
supplies (Kayunga District 2007a). Understaffing is mainly thought to be due to tight national
budgets. Shortage of adequate equipment and medication make efficient diagnosis and
treatment difficult, which is frustrating health personnel who are already underpaid (Kayunga
District 2007a). The Uganda AIDS Commission visited the HIV-clinic in Kayunga Hospital
in 2004 and observed that the counselling rooms were not satisfactory because of the lack of
privacy and that people attending VCT had to wait an average of four hours, which was
16
considered too long. Kayunga hospital had no educational materials and no brochures to take
home. More positively, the UAC saw trained facilitators holding group discussions for
PLWHA (UAC 2004) and hereby these counsellors created a forum in which experiences
could be shared. Especially the lack of privacy and long waiting times can be reasons for
clients not to turn up for appointments with counsellors. In this situation treatment
experiences and questions about it cannot be discussed, which does not stimulate adherence.
Economic variables
Economic variables influencing ART-adherence can be the treatment related costs and losses
of income. Expenses of treatment like clinic visits, testing, food supplements and travelling
are important barriers to treatment adherence, even when the treatment is free as it is in
Uganda (Katabira 2002; Barnett & Whiteside 2006:49).
Shortages of food in the households of HIV-positive people is strongly negatively
influencing adherence according to Hardon et al. (2006). Because ARVs have to be taken
after eating some food, PLWHA might skip drug doses when there is no food available. The
ARVs also increase the appetite, something that can be inconvenient for PLWHA when food
supplies are insufficient.
Ugandan health facilities cover large areas, resulting in long (walking) distances for
the client, especially those from rural areas. If a trip to the hospital costs too much time and
money, a HIV-positive person is less likely to get new pills and counselling, which can
seriously affect adherence (Weidle et al. 2006:1587; Hardon et al. 2006:266-278; Katabira
2002). The monthly drug refill appointments take place during weekdays, which means that a
whole day cannot be used for income and food generating activities. Healthcare expenses
related to HIV and AIDS and loss of income can exhaust African household resources at the
expense of support for both young and elderly dependants (Moore 2004; Poku 2005). The
payment of school fees for example might be threatened. Treatment related costs may cause
hunger for a whole Ugandan household, affecting the efficacy of the ARVs too (Hardon
2005:606).
Even when treatment is free, as is the case in Kayunga, ART will not be free of costs
for the HIV-positive person. There are costs of transport to the clinics, special foods and
supplements and of course the time spent travelling to the treatment facilities. The willingness
and ability to pay for these costs often directly depend on counselling, as counselling can
greatly motivate people in their ART.
17
Counselling
Counselling is a major source of information for a HIV-positive person and as such
crucial to adherence (Hardon et al. 2006). Good ART counselling, according to the literature,
offers psychosocial support for PLWHA and encouragement in ART (WHO 2003:9). HIV,
AIDS and the prevention of new HIV-infections should be explained in counselling sessions.
The working of ARVs and the significance of adherence should be made clear, disclosure and
treatment supporters should be encouraged and advice should be given on how to know when
to take pills. Side-effects should be explained, as well as how to act when they occur.
Furthermore ART-counselling should address ARV-combinations with alcohol, drugs and
traditional herbals. All this should happen in a context of mutual trust, privacy and respect
(UNAIDS 2004:2; Hardon et al. 2006:118, 292).
The Ugandan Ministry of Health is working to realize the provision of ART with
integrated counselling services in an effort to offer psychological support and information for
the clients (WHO 2003). The Ugandan MoH sees counselling as one of the most important
pillars in care for HIV-positive people on ART (MoH 2003). Where the MoH is expanding
ART, it intends to provide counselling and informative materials too. According to the MoH
policy, counselling sessions will start before the ART sets off and from then on the sessions
will be held at monthly refills (MoH 2003). Ideally, counselling is meant to fully inform
PLWHA and possibly family of community members about the therapy. Before ART is
started the clients’ informed consent is required. ART counselling can involve an assessment
of the response to the treatment, adherence counselling, the discussion of drug resistance and
side-effects. In addition the results of laboratory testing will be discussed (MoH 2003).
People who have difficulties adhering to ART should, according to the Ugandan
policy, get additional counselling to identify and solve barriers (MoH 2003). On the other
hand, low quality counselling can cause low adherence to ART. Sub-optimal counselling can
be caused by a number of health service related variables like a shortage of adherence
counsellors, lack of equipment, lack of privacy for clients and long waiting times (Hardon et
al. 2006). In Uganda the increase in people on ART needing close medical supervision
happened without the needed increase in health facility personnel. A HIV-positive person
who is not counselled and treated well might not adhere optimally to ART (Hardon et al.
2006:7-15).
The above variables indicate that poor health service resources and poverty of HIVpositive persons negatively influence their ART-adherence. In medical anthropological
18
literature the politics of ART, for example the differences in access to the treatment between
rich and poor groups of people are critically studied. I will continue by presenting theory
concerning differences in access and adherence to ART.
Theory and concepts on ART-adherence
Inequality, gender, agency of individuals, stigma and social support are theoretical concepts
that explain the influence of the above mentioned variables on ART-adherence. I will apply
these concepts on my study of ART-adherence in Kayunga since they describe the conditions
that form the main variables influencing ART-adherence.
Global ART roll-out and theories of inequality
The larger context of the experience of PLWHA, the local culture and political and economic
aspects, should be kept in mind when looking at ART-adherence (Baer et al. 2003). As AIDS
spreads globally, it causes more victims in Uganda and other African countries than in the
‘first world.’ The hardest hit areas are also the ones with less access to treatment, as compared
to the economically and politically powerful ‘north’ (Baer et al. 2003; Farmer 2001). Poverty
and social inequalities like gender inequality are closely related to higher rates of HIVprevalence. Women bear the highest HIV-incidence and they are also usually care givers to
PLWHA. Like Foucault (1980:176) and Desclaux (In: Castro et al. 2004), Baer et al. conclude
that external forces influence local health care, like the roll out of ARVs in this case. Disease
prevalence and treatment availability cannot be separated from politics and economies.
Unequal power relations and efforts of elites to preserve their position shape the local social
reality (Baer, Singer & Susser 2003); in this case the local reality of who will be infected and
who has easy access to ART.
When looking at ARV-use from the point of view of power relations, some concepts
come into analysis. I will use the concepts of gender, structure and agency, stigma and social
support since they form the underlying causes of unequal power relations.
19
Gender
The concept gender covers socio-cultural ideas of femininity and masculinity, ascribed roles
and norms of the sexes and power relations between them (in: van den Borne 2005). Within
the structure of a society both obvious and invisible power divisions are made (Lin 2001:95).
As Farmer (1999: 2001) strongly states, women get in many cases the smaller share of power
and means and the lion’s share of poverty, abuse of rights, HIV-infection and care for
PLWHA. For women, starting from this position, ART could be more difficult to access and
adherence could be most challenging.
In Uganda, gender relations are traditionally based on the patrilineal system. Gender
inequality is a common feature of gender relations and this inequality is for example easily
visible in land ownership privileges and inheritance rights, as they are assigned to men. In
addition, women have inferior positions when it comes to income generating activities and
decision making (Koenig 2004:789). By tradition Ugandan men are in charge, but there is
some space for women to manoeuvre in and that is where a woman’s agency comes in.
Structure and agency
Foucault states that public health and the society at large expect an individual to have the
freedom of rational choice (Foucault 1980). Communities in general suppose that people
(agents) are in control of their own lives and that everything that happens to them is the result
of their own rational choices (Shoveller 2006). Foucault describes a society that overrates the
level of agency of individuals. I think that poor and powerless HIV-positive people do not
have an unlimited freedom of choice of how they use ARVs and whether they disclose their
HIV-status to others or not. They have to deal with a context in which circumstances for ART
and status disclosure can be hard. A context is in some cases far more powerful than an
individual. This context can consist of structures such as dominant discourses (like the
stigmatisation of people living with AIDS), the economy (such as poverty) and social power
relations (including gender inequality). Individual choice is part of what can be referred to as
agency. Agency here can be explained as the capacity of self determination, although Van den
Borne prefers ‘the ability to act’ within and sometimes against these structures (van den
Borne 2005:3).
In my research one structure is public health care using biomedicine, more specifically
the HIV-clinic of Kayunga Hospital offering ART and counselling. Additionally, socio20
economic conditions like poverty, gender relations and discourses like stigmatisation of
PLWHA are structures. A structure can accommodate or constrain agency. Implementing
ART can be interactive and adapted to the individual client and thus enabling agency, or it
can be fixed and authoritative and thus allowing little agency. Gender equality can render the
same amount of agency to women as to men, yet unequal gender relations most often limit the
agency of women. A good socio-economic position can be facilitating, while poverty can be
limiting agency. In the same manner an indiscriminative discourse on HIV-positive people
can advance and a stigmatizing discourse on PLWHA can restrain agency. Agency can be
used differently, depending on personal judgment. Individuals have the agency to rebel
against their treatment and the authority of the counsellors by showing low adherence or even
stop their ART, or they can use their agency to cooperate with the ART regulations the best
they can. Additionally, poverty, gender inequality and stigmatizing discourses as restraining
structures can be dealt with in different ways. An agent can decide not to be tested for HIV,
not to start or to stop treatment because of those restraining structures. On the other hand,
agency can also be used to find additional sources of income and help and secretive or openly
confronting gender inequalities or stigmatisation. The different forms of agency possible
within this range show the space of action according to an individual’s interpretation of the
situation (Lin 2001: 34). Therefore, HIV-positive people on ART do not have a total control
of their own lives, as there are many variables impossible for an individual to control. On the
other hand agents are not programmed to live their lives according to external influences.
Individuals have room to manoeuvre and negotiate within their structures, depending on their
personal interpretations.
Stigma
Stigmatisation of AIDS and discrimination against PLWHA exist (UNAIDS 2006). Although
nationwide it has been reduced, on a local level in Uganda stigma persists. Sometimes fear of
stigmatisation keeps a HIV-positive person from disclosing his/her HIV-status to family and
friends, or it keeps him/her from starting or continuing treatment (Hardon et al. 2006). Using
Shoveller (2006) and Foucault (1980) I would explain the term stigma as following: stigma is
a negative moral judgement that others make of, in this case, HIV or AIDS or HIV-positive
people. Stigma is a social discourse that marginalizes its victims and can be enacted by
intolerance and isolation of PLWHA. Fear of HIV and AIDS and lack of information in a
community can be the basis for stigma.
21
Rational choice comes into analysis again when stigma is seen as a theoretical
concept. As explained before, public health assumes that behaviour and especially risk taking,
is based on rational choices (Shoveller 2006). This implies that a person is in control of his
life and chooses to behave in a certain way, such as taking precautions to avoid a sexual
transmittable disease like HIV or not. In this way talking about so-called ‘risk groups’ and
‘risk behaviour’ implies that there are people deliberately choosing to wander off from the
preferred path of safe behaviour and that this is related to moral judgements. Safe behaviour is
the right thing and in this case safe sexual behaviour supposedly leads to good health.
Different, more risky, behaviour is judged to be a bad thing to engage in, leading to diseases
like AIDS. Being HIV-positive is not only seen as the result of deviational behaviour, but also
a deviation in itself. This social deviation places HIV-positive persons in the situation where
others are free to judge them (Shoveller 2006). Stigma can thus be defined as a discourse of
disapproval and marginalisation. PLWHA become marginalised and stigmatised in societies
where the moral discourse on that topic is strong, which could be the case in rural areas of
Uganda.
Although care was taken to avoid stigmatizing HIV-positive people in Ugandan
campaigns, the early information has made communities aware of AIDS and part of the
population interpreted the disease as directly linked with death (Reynolds Whyte 1997). On
the other hand, ARVs can reduce the stigma on people living with HIV and AIDS since they
can change HIV into a more manageable disease (Farmer 2001: 405). From this point of view
the availability of ART might turn HIV into a chronic disease, instead of a slow death (Poku
2005). Nevertheless stigma and fear present barriers in adherence, since social implications
can still be huge when a person discloses his/her HIV-status. It can result in social
banishment: a HIV-positive person can end up being cut off of all social contacts (Reynolds
Whyte 1997). Stigma can also lead to the withdrawal of social support and loss of jobs
(Hardon et al. 2006:214). In a social environment where persons with HIV or AIDS are
stigmatized, people might reconsider HIV-testing, or choose not to disclose their status. It is
hard for Ugandan HIV-positive people to disclose their status to others; it is easier among
peers. PLWHA do not always feel accepted and understood by community members (Hardon
et. al. 2006). Stigma in a community can also lead to low ART-adherence because pills have
to be taken secretly. In such a context it may be hard for PLWHA to get help in case they do
not manage to take care of themselves and their dependants on their own. Stigmatisation of
HIV-positive people can lead to discrimination and social isolation of HIV-positive people
and therefore limit their social support.
22
Social support
Help for PLWHA from family, friends, communities and organisations is called social
support and that can take many forms. Social support is an important concept influencing
ART-adherence. Social capital is a theoretical concept on which the concept of social support
is based; therefore I will start by discussing social capital.
According to Portes (1998), anyone with a social network can build social capital,
which they can rely on for social support. By helping friends and/or family members, a person
creates a source of potential help for him/herself. Reciprocity creates social capital and social
cohesion. Groups and individuals can exchange gifts, for example at traditionally set
situations and forge a relationship in this way. The gift can range from an object to work and
at anytime the person or group who was on the receiving end should be willing to reciprocate
(Barnett & Whiteside 2006). When I apply the theory of social capital on people on ART,
then a HIV-positive person who has offered help to family members or friends in the past is
likely to expect those family members or friends to be willing to help him or her too.
Reciprocity is a social force; people who were on the receiving end once are bound to return
the favour at some point. PLWHA who have been able to invest in social capital by
supporting people around them when they needed help may have a bigger chance on receiving
social support when they ask for the help of their environment. The more others have been
helped by a person, the more this individual can ask of them. Social capital is the credit that
an individual has built in his community.
Social support is an informal support strategy of HIV-positive people, resulting from
the concept of social capital (Barnett & Whiteside 2006). I see the relation between social
capital and social support as following: if social capital is an amount of money on a bank
account, then social support is withdrawn cash. Social support is defined by Hardon et al.
(2006) as the help that a person receives from people in his or her social network. I should
note here that social support is not only given if someone has been able to invest in social
capital; there are various other reasons why people may help each other, and family ties are
the most important reason.
ART is demanding for PLWHA and the many forms of social support can reduce the
problems HIV-positives on treatment possibly face and make ARV-adherence easier.
Ugandan households and individuals affected by HIV or AIDS often turn to their (extended)
family or friends and neighbours for help with food and school fees (Crane et al. 2006: 437;
Hardon et al. 2006), but the network’s own poverty can prevent it from offering as much
23
assistance as is needed (Poku 2005). Assistance like care, emotional support and helping
remembering time schedules for ARVs, are often offered by close relatives including siblings,
children or parents of PLWHA (Zachariah et. al. 2007). A peer group of HIV-positive people,
the community, a clinic, a religious community and employers can also offer social support,
although this is often limited to moral support (Hardon et. al. 2006; Farmer 2001).
Large NGO’s like TASO and churches can provide social support in the form of moral
support and food aid through their local establishments (Poku 2005:168-188). Furthermore,
Ugandan HIV-clinics can offer moral support in counselling sessions (WHO 2003:9).
The adherence of PLWHA to ARVs depends on many variables, of which some have
been discussed in this chapter. The theoretical concepts inequality, gender, agency, stigma
and social support explain and describe these variables that are applied in my study. I
intended to draw a contextual picture of the adherence to ARVs in this literature review, now
I will continue by discussing the methodology of this study.
24
Chapter 3: Methodology
Study type
Sub optimal adherence to ART is a known problem and many possible causes have been
identified such as costs, stigma, lack of social support, disease- and treatment related variables
and shortages of medicines and counselling. This applied and problem-oriented research
aimed at assessing whether sub-optimal treatment adherence is the case among clients of the
Kayunga HIV-clinic and how counselling of PLWHA by health staff influences social
support. Ideally, if social support can be initiated or intensified through counselling, ART
adherence may improve. Based on the research results, recommendations will be given for
organisations helping (Ugandan) PLWHA by providing counselling and antiretroviral
treatment.
The study design was ethnographic and therefore qualitative and as comprehensive as
possible. An ethnographic description of the local socio-economic context has led to more indepth information on variables influencing ART in Kayunga. The fieldwork was multilevel:
executed on a micro-level when focussing on PLWHA and their environment and on a mesolevel at the health services in Kayunga town.
Study location Kayunga
The study took place from April to September 2007 in Kayunga, a rural town 80 km northeast of Uganda’s capital Kampala. The town has a governmental hospital that functions as a
referral hospital for the entire Kayunga District and some 100 km beyond its borders. I
conducted my research at the HIV-clinic of Kayunga Hospital.
Kayunga District has a population of 264.613 people and covers a surface of 1810
square km. The Kayunga Town Council had a population of 4726 persons when counted in
2002 (Kayunga District 2007b). The biggest ethnic groups are the Baganda (32%) and the
Basoga (16%). The majority of the district population is engaged in subsistence farming
(73%), lives in (semi) temporary structures (79%) and is literate (75% for females, 83% for
males). For 51% of the population the only source of information is the spoken word, they do
not have radios or newspapers. For 25% of the district population the nearest basic health
facility is more than five kilometres away from their homes, which can cause problems for the
25
58% of the people who have no own means of transport (Kayunga District 2007b). In urban
Kayunga town many people are involved in small scale trade, although farming is still
important for food supply. Several schools, health clinics and NGO’s are situated in town,
easily accessible for its population (Kayunga Town Council 2007).
Map of Uganda. American Memory 2007: http://memory.loc.gov.
The centrally located Kayunga Hospital officially has 100 beds, but more have been added
over time. The hospital is under supervision of the Ministry of Health and the Town Council.
It offers free medical care, immunisation and family planning services (Kayunga Town
Council 2007). The in-house HIV-clinic has approximately 1850 registered HIV-positive
persons, 370 of them are on ART. Some staff members of the HIV-clinic are volunteers,
although most are employed by the Ministry of Health.
26
Left: This is the road branching
off in the direction of Kayunga
Hospital. Several NGOs on the
sign posts are not active
anymore.
Above: Model of Kayunga Hospital in the seventies
(MoH). The HIV-clinic is located in the northern
wing.
Left: The waiting area of the HIV-clinic. The three
offices/ counselling rooms are on the right, the
antenatal clinic is on the left.
27
Study populations
The study took place among three different study populations, respectively a group of 60
PLWHA getting ART in the HIV-clinic of Kayunga hospital, seven staff members of the
HIV-clinic and ten staff members of NGO’s working with PLWHA in the region. Each group
of respondents had different information to offer on the themes within the scope of the
research and is therefore approached separately with different topic lists. The topic lists I used
are attached in the third annex.
The first study population consisted of 60 HIV-positive people on ARVs who were
registered at Kayunga Hospital. Among them were twelve men, 44 women, two boys and two
girls. Only one of these PLWHA spoke English, the rest spoke Luganda and only ten of them
had education above primary school level. Of these 60 respondents, 35 persons were
subsistence farmers, eight ran shops and nine did not have a job. Eight informants had various
kinds of occupations, there was a cook, police officer, a teacher, a tailor and there were two
health workers and two fishermen4. These PLWHA came from Kayunga town, Kayunga
district and even from beyond.
Seven health workers and counsellors of the HIV-clinic, all females, formed the
second study population. Most of these women lived in Kayunga town or a neighbouring
village. One informant was a medical officer. I also interviewed a head nurse, a nurse, a nurse
assistant and three voluntary counsellors of whom two were HIV-positive themselves. The
youngest health worker was 26 years old, the eldest was somewhere in her fifties. There were
men working at the clinic too, one health worker and two volunteers. The male health worker
had to divide his time over the clinic and the paediatric ward; it was impossible getting hold
of him for in-depth interviews. Therefore the fragmented information I got from him is part of
the participant observational material. I also did not interview the two male volunteers
because they did not counsel clients.
Ten staff members, both men and women, of organisations of PLWHA and support
organisations formed the third study population. These NGO’s were: KDNET (Kayunga
District Network of PLWHA), CARA (Kayunga Community Awareness and Response on
AIDS), TASO (The AIDS Support Organisation), WIDE (Women’s Integrated Effort
foundation for reproductive health) and MUWRP (Makerere University Walter Reed Project).
4
Annex two illustrates more background information on the respondents.
28
My assumption was that the population of HIV-positive people on ART could tell me
about their experiences with being HIV-positive and their treatment; therefore this group of
informants was selected. The staff of the clinic was expected to be able to share information
about ART policies and practices in providing the treatment and counselling. I approached the
NGO population for their contextual information and experiences, in addition to information
on their supportive activities in relation to the first two study populations.
Data collection and analysis techniques
The duration of the research period in the field was six months, before and afterwards a
literature research was executed. The applied data collection techniques were participant
observation, in-depth interviewing, unstructured interviewing and I also conducted interviews
using a questionnaire5. Medical files and documents were also consulted. The triangulation of
study methods and study populations have yielded different types of information and enabled
cross-validation of data (Hardon et al. 2001).
I carried out participant observation in the hospital setting and in the community.
Observation was essential in recording the behaviour of people, the events, the daily routine
of the clinic and also the material environment. In the last week of my field work I took
photos in addition to notes, since they convey a physical situation best. In the clinic specific
attention was paid to the features of the counselling rooms and waiting area, the age, sex and
physical characteristics of the people there and the use of verbal and non verbal
communication by both clients and hospital staff. I paid attention to the use of equipment like
latex gloves, needles, test strips, the BP measuring machine and the weighing scale. I was also
interested in medical check-ups, group-counselling and individual counselling sessions. In the
community I concentrated not only on transport, housing and income generating activities, but
also on safe water supply and public communication and attitudes on HIV and AIDS through
participant observation. In the clinic I participated in weighing PLWHA and taking care of
small administrative tasks and I lived in the community. I did not cover my identity or
interests in any way. I typed my (participant) observation notes afterwards, at my house in
Kayunga, because my tasks such as the weighing of people interfered with note taking on the
spot.
5
The tools I used are included in annex three.
29
Ethnographic in-depth interviewing techniques were applied while using a flexible
topic list. These interviews with both HIV-positive people on ART and clinic staff members
gave explanations for observations done in the clinic. They also yielded personal narratives
and experiences with ART, the clinic and the social environment. The main themes while
interviewing HIV-positive people on ART were health, pill taking, treatment support, clinic
visits, transport and disclosure of HIV-status. In addition felt and enacted stigma, poverty and
experiences and opinions on these topics were discussed. The topics of the interviews with the
clinic staff were the guidelines for ART, personal experiences and opinions in guiding
PLWHA on ARVs. I held seven in-depth interviews with clinic staff members and twenty indepth interviews with HIV-positive people on ART.
Ten unstructured interviews were held with NGO staff members to get information
from potentially new angles, since this lack of structure allows the respondent to take the
interview to topics he finds relevant. Reoccurring themes were stigmatisation of HIV-positive
persons, activities undertaken by the NGO and whether the NGO provided social support for
PLWHA in Kayunga.
In addition to the use of these methods, I conducted 60 interviews with PLWHA using
a structured questionnaire. This took place before the in-depth interviews and the twenty indepth interviewed PLWHA were among this group of respondents. The objective of the 60
interviews in which I used this structured questionnaire was to get an overview of the
situation of HIV-positive persons on ARVs in this clinic. The interviews covered the
following themes: age, education, occupation, food supply and income. Moreover, help from
others and care for others were (briefly) discussed. Health, treatment support, transport to the
clinic and adherence difficulties were other topics in the questionnaire. The 60 questionnaires
were completed with information on adherence from the clinic files.
Most PLWHA did not speak English. Excluding them from the research population
was one possibility, but that would create bias and seriously limit the number of potential
informants. Therefore I hired two research assistants who translated the Luganda spoken
during the interviews by the informants into English and my questions from English into
Luganda. My first research assistant was Lindsay, a young woman of 26 years old. She had
two children and lived in Kayunga town. She had a diploma in business studies, did not have
a paid job and worked as a voluntary counsellor at the clinic. After I had interviewed her as
HIV-clinic staff, she became my assistant. I decided to use an alias for her name because she
has also been a respondent. My second research assistant Allen was 24 years old and lived
nearby the Kayunga hospital with her mother. She did not have children. Allen recently
30
finished a bachelor study social administration and psychology at Makerere University and
she was not linked to the HIV-clinic staff. I did not notice any differences in the respondents’
answers to my questions whether I worked with Allen or Lindsay. I interviewed one HIVpositive client alone and again all topics were discussed in the same way as they were in the
presence of my assistants. Lindsay told me that my own presence did not seem to limit
respondents in their answers, because as a counsellor she had been discussing topics with
them similar to those in the interviews.
Records, files and other available written materials of Kayunga Hospital, -town and district were studied. They embodied a wealth of information in addition to, for example, the
structured questionnaire and the other interviews. From the client-files I got the ARVadherence rates calculated by the clinic staff and a record of counselling sessions. Documents
of several NGO's in Kayunga working with HIV-positive people were gathered too.
Interviews were taped and notes were taken as well. After the interviews took place
these recordings were typed out on the same day. Furthermore notes of participant
observation were typed out immediately after leaving the observation areas. The data were
sorted per study population and per theme, then categorized, summarized and coded. The
material was then manually put into matrices and analysed by theme. This led to the material
used in the empirical chapters three and four of this thesis.
Study limitation
I could not apply all the data collection methods I had planned. I did not succeed in making
case studies of HIV-positive persons on ART at Kayunga hospital and their social
environment, due to privacy and practical reasons. Out of fear of exposing someone’s positive
status I could not visit their houses and moreover, these houses and huts were hard to find and
very often at a big distance from the clinic. PLWHA only came to the clinic once a month. I
also did not manage to keep focus group discussions; it was already challenging to get to
interview individual informants. Getting more people at a specific spot at a specific time has
been impossible to realize because of the different schedules, obligations and plans of
informants. On the other side, I did meet up with some clients on ARVs more than once in
addition to the survey and interviews, this enabled me to ask further questions and see if
anything had changed in their treatment or personal situation.
31
Ethical considerations
A cautious approach is necessary when it comes to talking about HIV-related issues. I had to
be careful not directly linking people to the disease as this can lead to stigmatisation of
PLWHA by their communities. Many informants were free to talk about their medication and
support, though.
In addition to the ethical clearance of the hospital, confidentiality and informed
consent were a major point. I did not only ask permission of the involved clients before
observing counselling sessions, but also informed consent of the health workers was obtained.
Before interviews took place, all respondents were explained the purpose and topic of the
research and were asked for permission to interview them.
When using a tape recorder, informants were asked if they agreed with the use of it.
Furthermore, the wellbeing of all respondents is protected by shielding their names from
publication. Digital documents containing personal information were protected with
passwords.
32
Chapter 4: ART provision, adherence and counselling in Kayunga Hospital
This chapter will present empirical data on how ART is provided in Kayunga, what the
adherence of HIV-positive people on ART is and how counselling is carried out by the health
workers of the HIV-clinic of Kayunga hospital.
ART provision
The HIV-clinic
Kayunga Hospital was opened in 1977 by Idi Amin in Kayunga town. The staff members
offer both curative and preventive services, treating HIV and AIDS among other diseases.
Kayunga Hospital functions as a head-office for Voluntary Counselling and Testing services
in the district (Kayunga District 2007a;b).
The medical superintendent is the hospital director. He supervises the medical officer
who runs the HIV-clinic. There is a head nurse in the clinic and there are nurses, nurse
assistants and voluntary counsellors. Most of the volunteers working in the clinic are drawn
from the client source of the same HIV-clinic. Many staff members work shifts on the wards
in addition to the work in the clinic, except for the volunteers. The number of paid health
workers in the clinic can be seen as low. Usually there are approximately six staff members
present, including the volunteers. There are dozens of clients to attend to every day, so the
workload is high for the clinic personnel and waiting times are long for those who want to see
a health worker. The staff is trained on VCT and ART counselling by the MoH. Hamida is a
voluntary counsellor who is HIV-positive herself, she is a calm and gentle woman of 30 years
old. She recounts the training: ‘The Ministry trained us on ARVs, and on how to handle
people on ART.’ Some of the health staff of the clinic, like Hamida, has been trained by
TASO as well.
The HIV-clinic is situated in the same wing of the building as the antenatal clinic and
the drug dispensary. Most people do not use the main hospital entrance but enter the wing
directly. When you pass the drug dispensary and a waiting area you arrive in the hallway of
the clinic and the antenatal clinic. There are always people in line for the dispensary, they sit
and lay waiting for their name to be called. The walls are decorated with educational posters
on safe preparation of food, the treatment possibilities of clubfoot in young children, cross
generational sex and HIV-testing. Half of all the posters is printed in Luganda, the rest is in
33
English and all are with pictures. The shady hallway of the HIV-clinic functions as a waiting
room. There are not as many benches as needed to seat everyone: the narrow space is often
filled with people sitting on the floor. Women usually wear traditional dresses (gomesi) and
headscarves and men wear western trousers and shirts. Three small offices (approximately six
to nine square meters each) are used for (group-) counselling, testing, medical check-up and
keeping files. Two or more clients are counselled in one crowded room at the same time. Only
when topics are to be discussed that a client finds private or too sensitive to share in this
situation or when a physical examination is needed, some privacy is created.
Kayunga hospital has been offering VCT since 2000 and ART since March 2005. The
hospital HIV-clinic had 709 registered HIV-cases out of a total of 5355 people attending VCT
in 2006 alone (HIV-clinic report 2006). In July 2007 there was a total of approximately 1850
registered HIV-positives, 370 of them were enrolled in ARV-treatment. The uptake of HIVservices has been fast in this clinic. Far most of the clients on ART are on first line treatment
like Triomune 30; only one client has been put on second line ARVs. All HIV and AIDS care
and services are provided for free, including the testing services.
Providing ARVs and drugs for opportunistic infections
According to the clinic staff, ARVs are free and in stock most of the time. HIV-positive
people on ART get their drugs for a month and thus have to come back on a regular basis for
refill, medical check-up and ongoing counselling. In April 2007 there was a nationwide delay
in the provision of ARVs. At first this was managed by rationing the existing stock; PLWHA
got ARVs for two weeks and later on for one week only in order to keep everybody provided
for. I observed the smaller quantities of pills being distributed and the health staff explaining
their clients the reasons for it. Many wanted to know why they had to come back for refill
earlier and seemed to accept the reason. I interviewed the head nurse a few months later, she
recalled the period vividly: ‘Recently we had a national crisis, but we never, in this hospital,
we never missed giving out drugs, not even for a single day.’ PEPFAR drugs were used in
that period too, they were provided by the Makerere University Walter Reed Project6 so that
everyone could continue their treatment without interruption. Janet, an energetic voluntary
counsellor who is always present at the clinic, told me about the extra drug flow. Janet is 41
years old, HIV-positive and she is on PEPFAR drugs:
6
MUWRP, an American NGO that offers ART in a research project in Ntengeru and Kayunga
34
Walter Reed gave the PEPFAR drugs when Triomune 30 was out of stock for
three weeks. We explain to the patients that we don’t have enough drugs. We
give them drugs for shorter periods and then we give them PEPFAR drugs.
The drugs for opportunistic infections are also free but often out of stock, although again the
Walter Reed Project helps out offering PEPFAR drugs. The budget of the Ministry of Health
(MoH) is fixed, yet the drugs are costly and needed on a big scale, as the head nurse explains:
‘Our patients are many; we frequently run out of stock. The PEPFAR program also provides
these drugs, other patients don’t get PEPFAR. We keep that one for patients with HIV.’
It happens that PLWHA have to get their medication from somewhere else, like Anne,
a 30 year old cook, told me: ‘When I get illnesses I have to go to another clinic to get the
drugs if they are out of stock here.’ If it is a governmental clinic the drugs will still be free,
otherwise, they have to be paid for. On the other hand, the grandmother of two year old HIVpositive David remembers that malaria had been treated without a problem: ‘My grandson
very often had malaria. I talked to the medical personnel and they gave him some tablets for
it.’
Voluntary Counselling and Testing and CD4-count tests
The clinic offers VCT-services. Now the rapid test method is more often used than the
laboratory testing method, which saves time. The staff wears latex gloves (sometimes two
pairs at the time) and draw blood either intravenously or by pricking a client’s finger.
Especially with small and thin children it is hard to find the veins and they cry loudly during
the procedure despite the comforting words of the health worker and caretaker. For a HIV-test
blood is tested on the spot using test strips. CD4-count testing and viral load testing are done
by the Makerere University Walter Reed Project, samples taken by the clinic staff are sent to
them and tested in Kampala. The results are supposed to be communicated to the client within
a month, at the next refill appointment. I have not observed counselling sessions in which
these test results were discussed, therefore I do not know if this goal is achieved in practice.
There is a weekly routine of VCT and drug refill in the clinic, as 26 year old voluntary
counsellor Lindsay recounts: ‘On Tuesdays and Thursdays VCT takes place, on Thursdays we
go for the VCT-outreach and sensitisation of the villages. The other days of the week are refill
and counselling days.’ Lindsay is the only HIV-negative volunteer I met at the clinic, usually
volunteers are clients of the clinic themselves. The procedure from VCT to ART is usually
that a person voluntarily joins an interactive group-counselling session on HIV and AIDS,
35
then gets his blood tested, after which the results are communicated in a short but private
counselling session.
I joined seven health workers of the clinic7 on a VCT-outreach to a village fifteen km.
away from Kayunga. A group of about 25 villagers of all ages, more women than men, had
gathered on benches and on the ground under some mango trees. Many of them were
coughing and some looked very thin. Around noon a nurse started counselling the group on
HIV, AIDS and testing. Additionally, positive living, ARV-treatment and care for PLWHA
were discussed. The atmosphere was relaxed, people asked questions and sometimes
everybody broke out in laughing. A young woman was breastfeeding her baby when she
asked the counsellor what affects a positive HIV-test result would have on breastfeeding and
the possibilities of breastfeeding while being HIV-positive were explained to her. After an
hour the health workers started to register everybody and blood was pricked from their fingers
and put on test strips. When the first test results became clear, counsellors took the tested
persons individually to benches at a little distance of the group and told them the results. Out
of the 80 people eventually turning up for testing during the four hours that we were there,
four people had tested positive.
VCT in the clinic is similarly organised but offers a bit more privacy. Groups are
counselled in an office or waiting area and the spoken language is always Luganda. Usually
there are twelve to fifteen people, more women (some with children) than men and they are
generally older than twenty years and younger than 50. After this group-counselling session
they are individually called into another room to get registered and tested and results are
discussed in the third room. The clients, especially women, display more emotion during the
finger pricking (exclaiming that it hurts and looking away from their finger) than during the
result-counselling. The possibilities of treatment and positive living are comforting,
sometimes the HIV-status was already anticipated and sometimes a person simply does not
want to show emotions.
HIV-positive persons are requested to come to the clinic the next Friday for the CD4count test. Depending on the test results a treatment is chosen, as the head nurse explains:
‘When the CD4-count is below 250, we start preparing for ART. A patient might have a
higher CD4-count when we start ART because it also depends on the WHO clinical stages.’
PLWHA are counselled on positive living. Positive living entails for PLWHA acceptance of
their HIV-status and disclosure to some relatives and friends. Furthermore, balancing the food
7
Transport for outreaches is arranged by the Makerere University Walter Reed Project.
36
intake, hygienically handling food and avoidance of harmful substances like alcohol and
tobacco are part of positive living, just like taking precautions to avoid further transmittance
of the virus (MoH 2003). PLWHA eligible for ART are counselled and put on Septrin for two
weeks. Septrin is an antibiotic that is used both to treat opportunistic infections and to prevent
them8. After that, another counselling session takes place in which the levels of adherence to
Septrin and potential motivation of the HIV-positive person to take ARVs are assessed by the
medical officer. The remaining Septrin pills are counted to see whether the advised number
was taken.
My observations during VCT and counselling sessions reveal that children who are
tested positive are referred to the Children’s Program of CAI9, also within the hospital. They
get their medication and receive help with the payment of school fees, in addition to the
clinic’s standard services.
AntiRetroviral Treatment
After the HIV and CD4-count tests and counselling sessions, a client can start taking ARVs.
In this process it is also important that the HIV-positive person brings someone with him/her
to the counselling sessions, someone who can function as a treatment supporter (TS). The
medical officer explains: ‘Everybody will need help at some point, we tell them to have
someone.’ All 60 HIV-positive people I spoke with, except for one, found someone to
disclose to and as many as 90% have brought someone with them to counselling sessions. Not
all PLWHA find that an easy task to fulfil, tells Counsellor Lindsay: ‘Some people find it
difficult to bring somebody, but here we don’t start ARVs without a treatment supporter.’ The
counsellor states that ART cannot start without a treatment supporter, but I heard contrary
reports. Two PLWHA told me that they started taking ARVs without a treatment supporter. A
fifty year old shopkeeper said he could not disclose his HIV-status to others, but still he was
enrolled in ART and had good adherence. Monica, a 28 year old farmer, also does not
mention that TS was needed to start her treatment: ‘In November 2006 I was tested positive, I
was started on Septrin and when they found that my CD4-count was only two, I was started
on ARVs in February.’
8
Handbook on access to HIV/AIDS –related treatment, UNAIDS May 2003.
Child Advocacy International is an NGO aiming at improving child and maternal healthcare. They have an
office in Kayunga since 2005 and encourage HIV-testing on children (www.caiuk.org/projects/uganda).
9
37
I witnessed drug refill, medical check-ups and individual counselling sessions. People
are supposed to come to the clinic on the date agreed on at the last refill. Usually most of
them show up, unless heavy rains stop them from coming that day. People take place in the
hallway that functions as the waiting area and are called in by health workers according to the
medical files. The counsellors try to help people who have come first, but usually the order of
the files is used. First the weight is measured after which the file and the client go to another
health worker in the same room who measures the blood pressure. In this way there are
always at least two clients in the room. Sometimes the client can go straight to a counsellor in
an adjoining room, but usually they have to go back to the waiting area and wait for their
name to be called again.
For the counselling session the client takes place on a chair facing the counsellor. The
counsellor greets and asks how the client feels. Clients tell about their complaints and sideeffects (mostly a sensation of ‘pins and needles’ in hand and feet) and a physical examination
(usually of the mouth) takes place to check for infections. Drugs are prescribed and remaining
ARV-pills brought by clients are counted. If there are too many pills, the client is asked why
they are not taken. Some probing into adherence can take place, as well as a discussion on
how adherence can be improved. ARVs are usually refilled in the counselling rooms of the
HIV-clinic, for other drugs the client has to go to the dispensary. Sometimes a client is
referred to the medical officer for a more thorough physical examination. During my
observations a man came to collect drugs for his sick sister, a ten year old boy came with his
grandfather and sometimes I saw treatment supporters, but the refill usually took place with
the client only. Free condoms are offered too and frequently people refuse them, especially
women claim to abstain from sex. One man however took 36 condoms with him to cover the
month.
Adherence rates noted in the client-files are based on counted left-over pills, as
voluntary counsellor Lindsay explains:
When they come for the next visit, we count the tabs the patient has left and
look at the last date of visit and the return date. We count how many pills are
taken and how many are remaining and then we calculate the percentage.
From my interviews with HIV-positive people on ART and observations it became clear that
they spend approximately five hours in the hospital for each refill and counselling session.
Lara, a 45-year old farmer, is used to the long waiting times at the clinic. She told me the
following: ‘Every time it depends on the number of people, today there are few patients and I
38
will be here for five hours. Now I can leave early, but sometimes I leave at 3 or 4 pm: then I
spend 7 hours here.’ For Lara spending a total of five hours in the clinic is less than what she
is used to. This means that, when she comes home, she still has some time to work in her
garden where she grows maize to feed her family.
A family
buying food at
a small shop
within the
hospital gate.
Sodas, tea,
boiled eggs,
fried cassava
and matoke are
sold here.
Voluntary
counsellor
Lindsay is
measuring the
blood pressure
of her patient
in a
counselling
room. PLWHA
on ART are
medically
monitored at
monthly drug
refills by all
available staff.
39
Challenges in ART
Providing ART has its challenges from the perspective of the health staff and being on ART
has its challenges for PLWHA. The clinic staff says that they encounter challenges in caring
for their clients. The lack of space and the workload are often mentioned, also by the medical
officer: ‘We don’t work in shifts and when there are many patients, we work long days. There
is a high workload.’ A colleague of hers, a nurse, explains it as follows: ‘There is few staff.
Today there were 120 patients, some went back home after seeing the queue. The place is also
very small, the clinic is often crowded.’
Handling the clients themselves also raises dilemmas, as the medical officer recounts:
‘The patients come to you and they have very high hopes, which can be hard
psychologically.’ High expectations of clients cannot always be met. Poverty among PLWHA
is also a problem for ART. The nurse quotes a client: ‘they say: How do you expect me to
take the drugs with food?’ Since the hospital does not hand out food, this can be a frustrating
topic. Sometimes PLWHA do not show up on appointments for refill and counselling and do
not send someone in their place, leaving the staff wondering as the medical officer explains:
‘It is hard to trace people and we want to know what happened.’ The clinic and its clients
often get support from the Walter Reed project, for example when they run out of drugs or
when they need transport. The nurse states: ‘We contact the MUWRP people. They help out a
lot.’ In many ways the NGO secures a steady continuance of activities and flow of supplies of
all sorts, since they help out when the MoH resources fail.
HIV-positive people who are on ART are generally positive about the treatment they
receive at this clinic, although they also see points that can be improved. The long waiting
times and transport costs are the main problems for PLWHA. Peter, a 45-year old farmer, is
outspokenly content with the transference of knowledge about HIV and the treatment of the
clients, but criticizes the waiting times and lack of space: ‘It’s tiresome. Some of the patients
come from very far. They have to eat, so they end up eating their transport money. The HIVclinic has few rooms for the people and the services, bigger rooms would be better.’ Milly, a
32 year old shopkeeper, has an idea to reduce the travelling: ‘I just have to be patient for the
refill, I like this hospital, and it is my homeland here. I travel quite a distance to get here, but I
don’t mind. But it would be nice if we got enough drugs for two months.’ A more permanent
solution for the periodically travelling to the clinic was on the mind of Lara:
40
Treatment could be improved, if they gave us drugs that cured us completely.
We are given drugs that give us strength and ARVs made me come back to life,
aren’t there drugs that can cure me completely? It would be nice to be cured
completely.
ART provision is a service offered by Kayunga hospital to every HIV-positive person who
comes to the clinic and meets the WHO standards for ART10. There are challenges as
explained, like limited clinic supplies, small counselling rooms and high expectations of the
many clients, but these obstacles are in many cases overcome with some creativity from the
side of the clinic staff, flexibility of the clients and help from international NGO’s.
Adherence to ART
Measuring adherence
The staff of the HIV-clinic tries to keep record of the ARV-adherence of their clients and
therefore they ask their clients to take all the remaining pills with them for every refill
appointment, as the medical officer explains: ‘We divide the taken pills by the amount they
should have taken in that time and that times a 100. We count the pills they bring back and
compare it with what they had.’ The calculated adherence percentage of ARVs taken in the
last month is noted in the client files. The overall trend is positive and the head nurse
concludes: ‘The adherence is good.’ Based on the amount of pills that clients return with on
refill dates, the medical officer estimates the adherence rates of PLWHA on ARVs as follows:
‘80% of our clients who are on ARVs are adherent to their treatment, that means that they
achieved equal or more than 95 per cent of the drug intake.’ The medical officer comes to a
low estimation of ART-adherence at her clinic, but my study and Achilles Ssewaya’s study
indicate higher adherence rates.
The clinic files of the 60 clients on ART I interviewed indicate an average adherence
rate of 98% of prescribed doses in the last month. A high 94% of the interviewees achieve
equal or higher than 95% drug adherence. The clients usually say that they take their ARVs as
prescribed, like Peter: ‘I took all the pills as indicated by the doctors.’ Nobody indicates
problems in taking the pills, although two PLWHA told me about missing out on taking pills
when travelling, like Monica: ‘I take my pills at nine in the morning and nine in the evening, I
always move with the drugs. But I missed some pills in the last two days, I was with my sister
10
The World Health Organisation recommends starting ART for HIV-positive persons with clinically advanced
HIV, or with a CD4-count of 200-350, depending on the stage of the disease (WHO 2004:9).
41
and there was no transport to come back in time.’ The accuracy of the pill counting method
has its limitations. Achilles Ssewaya’s ongoing research (2007) in the same clinic indicates
that 90.1% of the PLWHA took 95% or more of their drugs. In addition to the pill counting
method, Ssewaya also used CD4-count tests to base his conclusions on. These three different
outcomes of estimated adherence rates have one thing in common: it is safe to say that
adherence to ARV-drugs is quite high in the HIV-clinic of Kayunga hospital. Age and sex of
PLWHA did not seem to influence adherence and, although all four children out of the 60
interviewed PLWHA had perfect adherence, this group is too small to draw general
conclusions.
Positive effects of ARVs
HIV-positive persons have high expectations when they start using the ARVs, like Fatima
who owns a beauty salon: ‘I was eager to get access to the treatment; I wanted to live more
years. I am safeguarding my life, before I was in a bad condition.’ Often PLWHA indeed
notice some improvements, as counsellor Janet experienced: ‘I am taking ARVs since April
2006. My CD4-count was 173, now it is 585. It is very, very good for me.’ Increasing CD4counts are very motivating health monitoring practices, the client can see the results of the
treatment directly in CD4-count test results. Sitara is a 34 year old shopkeeper and mother of
two children. Her husband died under circumstances that indicate that AIDS could have been
the cause. Sitara told me how she can see ARVs at work in her CD4-count: ‘I was on Septrin
when my CD4-count was 20, so low that I was told to start ART. My CD4 is now 360.’
People on ARVs also observe that their physical health is improving. Dante, a 53 year old
police man, explains how he knows that the ARVs are working: ‘I was sick when I started
ART. Previously I had itches and a severe cough, but I don’t have them anymore.’ Leila, who
works as a nursing assistant in another, smaller medical centre has similar experiences, her
fevers ended when she took ARVs: ‘Before my test I had a fever that went on and off. Now I
have no fever anymore, ever since I am on ARVs.’
Health improvements enable people to earn a living again and to care for their
families. Anne experienced this. She is mother of three children and has the sole care for them
since her husband died. She narrates: ‘I don’t fall sick that often anymore, I can keep
working. I didn’t miss a dose. I have to look after my young children. I want to extend my
lifespan, that motivates me to carry on.’ Some PLWHA experienced isolation when they were
sick, like Yathrib, a farmer of 32 years old: ‘I had no strength before the ART: I could have
42
continuous fever, flu, cough, diarrhoea, skin rash... It took me a long time before I could
move in public again, because my appearance wasn’t good.’ Yathrib benefited from ARVs to
the extend that she not only had the strength to walk again, but also dared to face the
community again. In general, health improvements greatly motivate PLWHA to take their
drugs properly, since the efficacy is proven as Maria, a 31 year old farmer, explains: ‘The
improvement in my health since I started on the drugs is also the motivation for me to take the
drugs well.’
Other ARV-users, like Peter, do not experience differences themselves, but they see
on others that the drugs work:
When I came here I was neither sick nor weak. But what I know is that the
drugs are keeping me stable. I know that this treatment can improve the
condition, because I had a niece who was very weak when she started the
treatment and now she is okay.
Seeing that others benefit from the ART can be a motivation for adherence. Some HIVpositive people take it a step further, at some point they function as good examples
themselves too, as Leila told me:
When I was told that I was positive, I feared that HIV meant the end of my life.
But then I saw that friends on ARVs gained weight. They told me about it and
the spots on their bodies also disappeared. I feel okay now and I am a
motivation and example for others.
Side-effects of ARVs
Adherence to ART is no smooth road; there are many potential obstacles underway. Sideeffects of ARVs, transport difficulties and costs and unexpected travelling are some of the
main reasons PLWHA mentioned for below-perfect adherence. Side-effects of ARVs can
seriously negatively influence ART-adherence, although I have not seen any examples of that
in practice. Counsellor Janet has experience in using ARVs:
PEPFAR drugs are three drugs combined. Stavudine, Lamivudine, Efavirenz.
The treatment is not difficult. In the morning I take one Stavudine and one
Lamivudine. And at night too. But Efavirenz, you take one tablet a day, at
night. I have no problem since I started using it in April 2006.
This counsellor does not seem to be bothered by side-effects, but many PLWHA are.
Adherence counselling very often has to take into account side-effects of the ARV-drugs and
43
counsellor Lindsay explains why: ‘A patient can decide not to take the pills for one or two
days, to see if the side-effects happen again, to see if these drugs are causing them.’ Common
side-effects mentioned by both health workers and their clients are nightmares, painful hands
and feet, dizziness, headaches, black nails and darkened skin. I have not witnessed a situation
in which someone decided to end his or her ART due to these side-effects. During refill and
counselling sessions counsellor Hamida also discusses side-effects: ‘When you find
something new while taking drugs, please report it. Don’t leave the drugs. The physician can
see how to handle; maybe you need to switch to the other line.’ Side-effects are acted upon by
switching a client to another drug regimen, or by giving nutritional advice.
PLWHA often report side-effects like nightmares and painful hands and feet. Jasmine
describes the side-effects she experiences, they are the most common ones: ‘I am healthy,
except for the numbness of my body, I also have pain in my legs, arms and hands.’ The staff
indicates that side-effects can be dealt with and Monica confirms the possibility for treatment
adaptation: ‘I experienced numbness in my fingers and feet. Since then my drugs have
changed: now I am on Triomune 30 instead of Triomune 40.’ As a farmer, with two children
and no partner, she relies on her hands to provide food for her family. She told me that the
change in drugs worked well for her. The head nurse explained to me that ARVs can also
work without causing nasty side-effects: ‘Not everybody gets side-effects and if they
experience them, they mostly get nightmares.’
Adherence to ART seems to be high in the HIV-clinic of Kayunga Hospital, despite
the challenges the PLWHA face. Personal experiences of increased health and good examples
of other HIV-positive persons who benefit from ART seem to greatly motivate HIV-positive
people on ART.
ART counselling
Counselling is an important part of the treatment of HIV-positive people, especially for those
clients on ART. Positive living, optimal drug use, disclosure of the HIV-status to others,
illnesses and specific problems of PLWHA are all topics in counselling sessions in order to
inform and support the clients and to ensure proper treatment.
44
General HIV and AIDS counselling
During VCT the first counselling sessions contain general information on the disease. This
VCT can take place either in the clinic or in villages during VCT-outreaches. Counsellor
Lindsay explains: ‘We first talk about what is HIV and what is AIDS. Then we talk about the
transmission of HIV, the prevention, the signs and symptoms and testing. We also talk about
nutrition.’ I observed in group-counselling sessions that quite a lot of information is conveyed
in an understandable way, in the clients’ own language and word use. On outreaches the
health staff tries to sensitise communities on HIV, AIDS and ART during group-counselling
sessions. Counsellor Hamida finds it difficult to replace existing ideas:
We try our best to take the message to the villages, but as you know, people are
very difficult. They say they know about HIV and AIDS, but they don’t, they
have wrong ideas. When people are sick, for example fever for a month, they
always think of HIV/AIDS. But sometimes it is malaria, or maybe typhoid:
there are many kinds of illnesses.
Further HIV-counselling in the clinic involves for an important part reassuring PLWHA that
they still have a life and responsibilities, as counsellor Janet explains:
We tell them not to worry, not to think that it is time to die. Because there are
so many people with HIV but they are still alive. They still have a role for the
family and have to try to get school fees and clothes for their family.
In counselling sessions PLWHA are helped to accept their status in order to clear the way for
next steps. After acceptance, future plans are also important, according to counsellor Lindsay:
‘We talk about making future plans, not long plans but short plans that can be fulfilled. Then
after, if you still have time or energy, you can make another plan.’ Lindsay also discusses
social behaviour and psychological health: ‘Being with your friends or in drama clubs can
help you psychologically.’ HIV-positive people are not only advised to keep their friends and
family close, but also to use their religion as a source of strength. PLWHA confirm that
acceptance is a topic of discussion and for Yathrib, a 32 year old farmer, acceptance was the
only option that made sense to her: ‘I felt very strong about the HIV-diagnosis, because there
was nothing else I could do.’
Leila narrates what she has learned from counselling on positive living: ‘I can stay
alive and protect myself by eating fresh food, drinking boiled water and using a sleeping net. I
45
feel okay, although at first I was afraid.’ Positive living is an important concept in counselling
sessions, as counsellor Hamida explains:
We teach people to live positively. If you’ve been drinking alcohol or smoking,
we say please stop that. We talk about diet balancing too. If you had many
boyfriends we advise you to have just one or to abstain from sex. With a
partner we advise you to use a condom, for their protection and against reinfection. We advise you not to separate because of HIV, to keep loving each
other...
Hamida is now on family planning herself, after giving birth to four children. Not always is
the advice of the health staff integrated in the lives of people, as Lara indicates: ‘The doctor
[medical officer] here asked me, why have you not conceived? She wants to know whether I
use condoms during intercourse, but I don’t use condoms. I just don’t conceive.’
ART counselling
ART counselling has in addition to the general topics the extra aspect of ARV-use, as
counsellor Hamida explains: ‘When you are on ART, we advise you not to use alcohol and
don’t combine ARVs with herbs. Also take your drugs in time.’ Some HIV-positive persons
use traditional herbal medicine to boost their immunity and the clinic staff only advises
against its use when someone is on ART. Adherence to the principles of positive living is still
recommended in ART counselling, on top of adherence to the correct use of ARVs. Those
messages are understood by the clients and they very often physically feel that the drugs
improve their health, as Leila told me:
My husband died, that is why I wanted to get tested... At first I was afraid, but
now I have the drugs and I am feeling like I can stay here for years. For me
positive living means abstaining from sex or using condoms, I also don’t
smoke or drink. That is what I was doing already. The drugs make the virus
dormant, so the white blood cells don’t get killed. I am motivated to take all the
pills, because then I don’t allow the virus to wake up again.
Counselling has been an important form of mental support, not only for PLWHA themselves,
but also for those caring for them. David is two years old, his mother died of AIDS. His
grandmother takes care of him, along with five other grandchildren. She told me how she felt
when David was tested: ‘When we got the result of the HIV-test, when we discovered, it hurt,
but I gained strength from counselling. Now my grandson relies on the medicines. Before I
46
spent nights without sleep and the child was crying.’ The fact that there are drugs available
that significantly help to keep someone going is a strong reassurance for both clients and
caregivers. For Leila the treatment was a motivation to get tested and ART is good news that
she likes to share with her environment:
I was very eager to know my status, so when I heard that health workers were
coming to my village, I decided to get tested. I was positive but I was not
angry. I wanted to know my status, so I could start the treatment. Right from
that day I am monitored; I am more close to medical personnel since then. I
acquire knowledge from them and treatment. I also teach my friends and
community members and I bring them here.
Adherence and counselling
The goal of ART counselling is optimal adherence and, as counsellor Janet puts it: ‘ART
counselling is adherence counselling.’ The advantages of ARVs and disadvantages of not
taking the drugs are discussed by counsellor Lindsay:
These drugs make the virus dormant, so it cannot fight the CD4-cells. So if you
miss taking these drugs, the virus wakes up. It regains power and it attacks you
in a strong way. Sometimes bad adherence can lead to death.
Counselling is done on whatever problem a client brings up, because a problem might
otherwise cause poor adherence. The head nurse told me: ‘We always ask them, you were
supposed to take this amount of pills, what happened? They tell us. We tell them what
happens if you don’t take the drugs, or don’t take them in time. They have to know.’
Language can form a barrier here, according to counsellor Lindsay: ‘Convincing someone
who comes from far is difficult. We only use Luganda, some people can pick some words. So,
you may find that these people may not be well at adherence.’ Lindsay tries to find ways to
communicate nonetheless, to convey the message that ARVs offer a chance only when taken
seriously. ‘Some people don’t take it seriously. They come late; they don’t know that it is
very expensive and that there are many people who want to get these drugs.’ David’s
grandmother on the other hand, takes ART very seriously. She mentions counselling as a
reason for adherence:
It is no problem to let my grandson take the syrups and pills. I know the time, I
give him at eight in the morning and eight in the evening. He likes it so much,
even the tabs, he just chews! I never miss to give any medication. He had all
the pills in the last two days, it is impossible to miss, I was counselled about it.
47
Wherever I go, even when I spend the night there, I take him and the drugs
with me.
Counsellors motivate their clients to take the ARVs as prescribed and explain the working of
the drugs. By doing this they contribute to successful treatment of PLWHA. Clients often hear
different stories in the clinic and at home; people might tell them that the ARVs are not
working or even sterilize or kill people. Counsellor Hamida heard the stories about ARVs:
In the villages, they think that when you take ART you die faster. We do our
best to teach them about ARVs. There are very many people on the drugs,
people see that they are living longer, so people say: Ah, are you still on drugs?
You’re not dead! That is also a good thing, people are improving.
Clients can stop their treatment because of the ghost stories they hear about ARVs. Therefore
clients are counselled at every refill appointment and ART is explained during groupcounselling during outreaches in the communities. Additionally, treatment supporters can help
a client to remember what is told in counselling sessions, to ensure optimal adherence.
Counselling, disclosure and treatment supporters
The clinic health workers respect the privacy of their clients. On the other hand the clinic staff
is very keen on motivating clients to disclose their HIV-status to others, in order to get these
PLWHA some vital treatment support. The short and ever smiling nursing assistant tells how
she and her colleagues work:
We ask you: if you want, you can tell your relatives about your HIV-status.
Some don’t want to tell their families. They are afraid. Because in the village
they are going to point at them, this one this, this one that... But when you’re
getting the drugs and you are really sick...
The health workers at the clinic worry that a client might not be able to take care of
him/herself at some point and will miss out on picking up the ARVs. The disclosure of
someone’s positive status to others in his/her direct environment is an important first step to
avoid this problem, as counsellor Lindsay recounts:
You know, disclosure is a process. It’s always difficult to go and disclose to
somebody. Things are done step by step. Clients such as women who are
married may fear to disclose to their spouses. They fear things like divorce. But
some patients have disclosed to their family members. We tell them to disclose
48
to people who they expect to support them financially, or to attend to them
when they are sick and will be coming with them for ART counselling.
Since a treatment supporter is essential for starting someone on ART, this is a subject of
conversation too, according to the head nurse: ‘Before they start using the drugs we have at
least three counselling sessions about ART. Before we start, you have to get a treatment
supporter who will help you.’ PLWHA indeed try to disclose and to involve others in their
treatment. Maria, a 31 year old farmer, for example has managed to disclose to her friend. She
told me that her friend became her treatment supporter: ‘At home, my sister helps too, but my
friend is the one who comes with me to the clinic.’ Maria’s husband has died and she has one
child in her care. A treatment supporter has to take care of the HIV-positive person so that
he/she can adhere to ART. The head nurse explains:
The treatment supporter’s role is reminding the patient when to take the drugs,
when to come back to the clinic for refill. He also has to help that patient in
case he is weak. He can also look for transport. The patient can get admitted in
Jinja or Kampala, so the TS has to know that my client is supposed to come
back here for drugs. He’ll come here with the book to inform us that the patient
is admitted and that he collects the drugs instead.
Drugs are handed over to treatment supporters if the client is not strong enough to come to the
clinic him/herself. A major task of a TS is reminding PLWHA to take his or her medicine on
time with food and bringing the HIV-positive person to the hospital when he/she is sick.
ART-adherence rates are high at Kayunga hospital. The free ART provision plays an
important role in positively influencing adherence, just as counselling. Counselling plays an
important role in the contact between the clients and the medical personnel of the HIV-clinic.
It is the most important way of conveying information essential to proper drug use. In the
words of the staff: ART counselling is adherence counselling. When PLWHA fail to attend to
counselling sessions and refills, they miss out on information, moral support and drugs. This
leads in most cases to sub optimal adherence of HIV-positive people to ARV-treatment. In
addition to counselling, social support received by PLWHA can enable good adherence. How
social support is experienced by people on ART in Kayunga will be elaborated in the next
chapter.
49
Chapter 5: Social Support
PLWHA registered at the HIV-clinic of Kayunga hospital report that antiretroviral treatment
involves costs and they also account several forms of support to cover these costs. Although
the treatment itself is free, it still induces travel expenses and costly diet changes among other
disbursements. Social support, help from others, can help covering these costs, as it can also
morally strengthen persons on ART. Moreover, HIV-status disclosure and responses to it by
the social environment of PLWHA are discussed, as disclosure is an important facilitator for
social support.
ART related costs and needs
Food
Nutrition needs change when antiretroviral treatment is started. This causes extra costs for
PLWHA: fourteen out of the 60 interviewed PLWHA indicated problems in the food supply
of their household. Food is often not sufficiently available before ART is started and
increased nutrition needs caused by ARVs strain this meagre supply even more. The ARVdrugs that PLWHA get from the clinic are free of charge, but they have effects that imply
costs, as the medical officer indicates: ‘Those who are started on ARVs are really sick, so
initially they don’t have a feeding problem. But after a month the appetite comes back and
they don’t always have enough food.’ As Janet, a counsellor and HIV-positive herself,
explains the needs of PLWHA:
You have to eat more when you start it! We try to get food. Sometimes you
have no money but you have to eat and you have to take those drugs! You have
to change your diet. You have to eat at breakfast, matoke11, cassava and greens,
avocado, jackfruit, bananas... It is very difficult to get it.
According to Janet, ARVs increase the appetite and they also have to be taken with food,
which causes problems for PLWHA with limited means. Another counsellor, Lindsay,
indicates that appetite is not necessarily a problem since a desire for food is healthy and many
people cultivate land for food production: ‘It is good that the patient gets a good appetite.
Most of our patients are farmers: they gain their food from their garden.’ The head nurse of
11
Matoke is steamed or boiled plantain.
50
the clinic narrates some experiences with counselling PLWHA on nutrition: ‘Some say: ‘Ah,
your drugs, they make us eat, we don’t have enough food to eat.’ And we tell them: we give
you the drugs to get healthy, so that you can work for your food.’ The head nurse sees the
physical improvement of clients as an opportunity for them to work again and earn an income
or produce their own food. Although 48 year old Leila still has her job at a medical centre
since she was tested positive, she finds it difficult to balance her diet:
The balancing of the diet creates financial problems. I eat millet porridge,
cassava or matoke with groundnut sauce and dried small fishes. Sometimes I
eat dodo12, jackfruit, papaya or beans. And occasionally chicken, but there are
times I don’t eat chicken for two months. I can get milk or eggs once a month.
I normally drink boiled water.
Especially dairy products are missing in Leila’s diet, because they are relatively costly. She
has three children to care for and no partner. Jasmina, a tailor taking care of her three children
after her husband died, sketches a more problematic picture of her food supply. She did not
dare to start taking ARVs because she felt she was in no position to meet the nutritional
requirements: ‘It was my poverty that discouraged me at first from taking the pills, because I
had nothing to eat, there was no food.’ Fatima, who is 38 years old, also struggles to get
enough food, although she has a small beauty salon and a garden: ‘I encounter problems with
food: I have a small plot, but the harvest is not enough.’ Of the interviewed PLWHA 85% is
involved in income- or food generating activities and at least 59% of them cultivates a garden.
However, according to the interviewees, there often is an inadequate amount of food in their
households and they sometimes even indicate that they need help.
Transport
Transport to get to the clinic for appointments is another challenge. The clinic’s clients are
told to put money aside for the return dates, as the nurse explains: ‘We say: we give you pills
for a month and you should at least try to save money in that month to come back.’ When I
asked staff member Hamida if clients report any difficulties with ART-adherence, she replied:
‘They do! Many patients have difficulties with transport, to come back to the hospital for
drugs.’ The medical officer agrees that transport is a problem. The transport costs increase
when people come from villages that are remote from main roads and this endangers the
treatment adherence.
12
Dodo is a kind of spinach.
51
Sometimes they come from far, that is costly, or they come from small villages
where there is no transport. Some use bicycles or boda boda’s13. Some walk or
take lorries that carry milk to Kayunga town and Kampala. But if they are far
from the main road, they have to take a boda boda and that can cost them 2000
shillings14. If they don’t have money and they run short of drugs... I think that
is why some of them do not adhere well. Transport is a big obstacle for
adherence.
PLWHA confirm having transport problems. Transport itself can form an obstacle, as
Mohammed, a 39 year old fisherman, accounts:
I was in a critical condition with a CD4-count of only four. I was close to death
when I had my positive result. I weighed 39 kilogram’s at the time, yet before I
was 62 kg. I had wounds in the intestines, I couldn’t eat or drink. I had a rash
all over my body. After getting the ARVs my life changed because I could
move again, which wasn’t the case before. But then the problem was to devise
means of getting to the clinic for the pills.
Mohammed has a wife and six children to care for. That motivates him to get the drugs and
regain strength to earn a living. However, his meagre income and the costs of caring for his
family leave him little or no space for paying the transport costs. Vera, a 36 year old
shopkeeper and mother of six children, also admitted that her ART-adherence suffered from
of a lack of money to travel: ‘When I started on ART, months passed in which I couldn’t meet
the return dates because I had transport problems.’
Many people do not have their own means of transport and many of them do not live
near a main road with easy access to public transport, as Fatima recounts: ‘In June 2006 I was
tested positive, in September I started on Septrin. I was in a village, so I could not access the
tabs earlier. In December 2006 I started ART.’ Not having enough money was repeated a
difficulty for people on ART, resulting in transport problems for 47 out of 60 interviewed
people on ART and shortage of food for fourteen out of 60.
On the other hand, when the ART is successful, an HIV-positive person gains strength
and can work again, like Peace, a 30 year old farmer, experienced: ‘The treatment is good for
me. Now I am okay and I earn money for the transport, which I couldn’t at first.’ Peace has no
partner and two children in her care. Travelling and being away from home, often result in a
situation in which pills tend to be forgotten or cannot be taken, as Elisabeth, a mother of eight
children, told me: ‘I take my pills in time, but I think that I have missed once when I was
13
14
Boda boda’s are bicycle riders or motor riders who transport passengers.
2000 Ugandan shillings approximately equals one euro.
52
travelling and forgot to bring my pills with me.’ Dante also recounts situations in which he
could not take his pills:
For work, I sometimes have to go far away and then I tend to forget.
Sometimes we go somewhere and expect to come home the same day, but it
happens that we spend the night there and then I miss out because I have no
extra pills packed.
The clinic often hands out extra pills, in case a return date cannot be met exactly. Hence a
delay of some days is possible without missing pills. Policeman Dante still foresees trouble
because he thinks it will be difficult to get refills in the coming period: ‘I am going to get
training for my work, it will take three months and it is far away. I am worried about the drug
supply. Will I get all the tabs?’
Jill, a farmer and mother of six children, indicates that transport problems have
implications for her children too. She has not been able to bring them for a HIV-test: ‘The
problem is transport, my legs hurt when I walk a bigger distance. Because of poor transport I
have not brought the children for the HIV-test.’ Maria also farms, but she lives close to a
main road and therefore she encounters no problems in transport: ‘I always come by matatu15
here, it’s not hard to get one.’ Of the 60 interviewed PLWHA 78% indicated that transport to
the clinic was a problem for them and often they (implicitly) indicated that they could use
some help here. The costs vary, 1500 Ush is the average indication of transport costs. It is less
than a euro and although I do not have numbers on household incomes, my guess is that this
expenditure has a perceivable impact on household resources.
Transport and additional food costs are not the only costs that are involved in ART for
PLWHA, although these are the costs that are mainly mentioned by my informants. Indirect
costs also involve time spent travelling and time spent in the clinic that otherwise could be
used for income- and food generating activities.
Disclosure of HIV-status
HIV-positive persons on ART may need help in covering the above mentioned costs. People
around them can offer help in the form of social support. The disclosure of one’s HIV-status
to his/her partner, family, neighbours and friends can be a first step.
15
Matatu’s are minibuses used in public transport.
53
Partners
The possibly most important person in a HIV-positive person’s life who he/she has to disclose
to is her/his partner and yet the obstacles to tell a partner about being positive are the hardest
ones. If there is no disclosure to the partner, the ARV-adherence is in jeopardy as also the
health of the partner, as the head nurse explained:
Some don’t want to disclose. But how then, do you practise safe sex? How do
you take your pills? You stay together in the house, your spouse is there,
you’re always hiding and it affects you taking your pills. Those who have
disclosed find it easier. There are very few who don’t disclose. Most cases are
between a wife and the husband. But even then they can always disclose to
someone else, a sister, a friend... In the end we get them on board. We talk
about disclosure and safe sex, although sometimes they get pregnant.
If possible, it is preferred that couples are counselled together, explains counsellor Hamida.
‘Disclosure is the main difficult thing to the patients, most found it very difficult to their
partners. Usually I advise them to call the partners to the hospital: we counsel them together,
until we overcome the problem.’ Hamida has told her partner that she is HIV-positive.
According to her, especially women fear disclosing to their partners and women often suffer
divorces because of disclosure. On the other hand, other couples stay together, or partners get
themselves tested too. Hamida tries to help her clients in counselling sessions to follow her
example and tell their partners their status. A woman’s fear for the reaction of her husband is
often mentioned. Some partners start looking for another wife after they find out that their
spouse is HIV-positive and some may be HIV-positive themselves but reject the HIV-test, as
counsellor Hamida explains: ‘Some don’t disclose because of fear that their husband will send
them away or that he refuses to get tested.’
Peter, a farmer and father of fifteen children took the step to tell his wife: ‘First I
disclosed to my wife. Now she is also tested positive.’ His wife is still with him, but Anne had
a different experience when she confronted her husband with her status: ‘He was sick, but yet
he divorced me and he got another wife. He said it was a different disease. He died later on.’
Anne’s husband left her for someone else when he heard she tested positive. He did not want
to get tested himself. Milly, a shopkeeper and mother of twelve children, disclosed to her
husband and parents. She does not trust others with this information, she fears that they might
discriminate and gossip. Her husband is still with her:
54
My husband knows, he is not tested, but I think he is positive. I now use
condoms, that is the only change that I made in my life. It might protect my
husband, but he can also have another type of the virus and infect me with it.
He accepts using condoms.
Milly uses condoms now. Naima is a farmer and she has three children, her partner does not
accept condom use: ‘My partner has another wife. I think he is infected too. I had a talk with
him about my status and medication, but he doesn’t want the test and refuses to use condoms.’
Mohammed told his wife about his status too and he admits that he does not use condoms: ‘I
used condoms for some time, but they cost me too much strength. And I know that both of us
are HIV-positive. My wife is also my treatment supporter.’ Jill’s husband reacted in an
aggressive way when she talked to him about her test result:
I was first chased out of my home because he felt it was embarrassing for him
to have a positive wife. Afterwards, he came for testing. After discovering that
I was positive I never had intercourse with my husband again.
Furthermore, 53 year old Dante did not have intercourse with his wife since he had his HIVstatus checked, but he is still delaying to tell her: ‘My wife is not tested and she does not
know about me. I still want to tell her. I don’t have sex with her anymore, because I am afraid
to infect her.’ Vera has experienced what it feels like when your partner keeps his positive test
result for himself. A relative told her about it and then she had herself tested too.
I expected my partner to be faithful which was not the case. He was ashamed
and he said that he could not tell me the truth because he was bewitched by me.
A relative disclosed it to me; it was the worst experience in life. I had pressure,
I could not eat.
Vera’s husband is also on ART now. In some cases women only get tested after their husband
supposedly died of AIDS, like counsellor Hamida experienced:
For me, let me tell you this. When they tested me and I found myself positive, I
had already decided that what they will tell me is the real thing. Because my
husband was already dead he might have had the virus.
With the partner no longer around, PLWHA usually disclose to others. Ten out of the twenty
interviewed persons on ART indicated to have a partner. All three men had a wife. Three out
of ten people with a partner, two men and one woman, know their partner to be positive and
three women suspect their partners to be HIV-positive but they have not tested yet. Most
people told their partners their HIV-status; the only person I know who did not tell his wife
55
was Dante. Five women out of twenty interviewees told me that their partner had died.
Women find it more difficult to disclose their status to their partners because of the risk that
they will be divorced. One woman I spoke with indicated that her husband had divorced her
after she disclosed her HIV-status to him. Moreover, of the people I talked to, only women
became widows due to AIDS-related deaths.
Family
Illnesses, taking ARVs and visiting the clinic can be hard to hide for family members.
PLWHA are encouraged to disclose their condition to their relatives, although some may fear
to do so. The response can be heart-warming, but it can also be an ice-cold disappointment.
Counsellor Hamida told her sister that she was HIV-positive and asked her to tell her parents:
From the hospital I immediately told my sister and I told her to tell our father.
And she did. He felt very sorry, but he didn’t want to show me. After a month
he called me and counselled me very well. And I told him: it’s okay. My
mother feared; she didn’t talk to me. She cried, after some time she cooled
down. When we speak now, she avoids the subject.
Hamida felt sorry for worrying her parents, but in her father she found somebody whom she
could talk to. Taking the step to tell family members one’s HIV-status could go well, as
counsellor Janet experienced too: ‘I told my family, they know that I am HIV-positive. I had
to explain everything to them, but they responded well.’ PLWHA often have to explain HIV
and the ART in the process of disclosure. Elisabeth, a 50 year old farmer and mother of eight
children, told me that she can talk freely about being HIV-positive: ‘All people know, I saw
no reason for hiding myself from them.’
Leila did not tell her children her HIV-status. When they ask her why she takes drugs,
she only tells them that she is sick, she does not explain further. Her son is seventeen years
old and her two nieces living with her are thirteen and nine years old. ‘I don’t tell my son, I
am afraid that he will worry that I will not be able to pay school fees anymore and that he will
drop out of school because of me.’ Leila wants her son to continue school and not to be
anxious, something she tries to achieve by hiding her status from him. Monica encountered
mixed reactions, she is not stigmatized by her environment, but she lost the help of her sister:
56
I have disclosed and I am free to talk about my status. People don’t
discriminate me. Except for one sister, she responded negatively, she doesn’t
help me anymore. She says that I will infect her children, because I had a
cough when I was staying at her place. I was working in her shop and I had to
go away from her.
Leila does not inform her children about her status, while Elisabeth has no problem telling
people about it. They have different ideas of the possible results of disclosure. Leila is afraid
to worry her son, but Elisabeth does not foresee any problems. Monica has indeed faced
negative consequences, as she is not on good terms with her sister anymore. PLWHA tend to
disclose to people they trust and from whom they expect the least negative reactions.
Neighbours and friends
Sometimes PLWHA choose to tell their friends instead of their family, or it happens that the
social environment of PLWHA guesses that a person has HIV, as counsellor Hamida
recounts: ‘The neighbours know because they saw my husband fall sick for some time, they
knew even before I tested. I also came out and told them, I also know, I’m positive and I feel
free.’ Hamida used the conversations on her health as a start to advise others to get tested too:
I told them: I also advise you to test yourself. You see me, I’m healthy, and I
have no problems. So why don’t you test? Some of them tested and found
themselves positive and they came to the hospital. I have a neighbour who is a
client there. When you stigmatize yourself, you find a problem. You are afraid
and also people can fear you.
Hamida finds disclosure a means to avoid stigma, since it offers a way of explaining HIV to
others and staying close to them. Still there will always be people who choose not to disclose
and who prefer travelling a longer distance to get ART, as the medical officer makes clear:
‘We serve people from the whole Kayunga district. Because of stigma, some people will
favour to move distances. Sometimes they even come from Arua.’ Arua is approximately 350
km away from Kayunga. Even if there would be a clinic close to them, a few would prefer to
travel further to avoid being seen and recognized.
Peter told his friends about his status and they responded with disbelief: ‘They could
not believe it because my wife is not dead. They are not sure of my status and still close to
me.’ Leila had different experiences with her disclosure, although she is still treated well at
her workplace. ‘When I disclosed the response was fear, some people just don’t want to know
57
about it. I approached my manager at the medical centre where I work. I got some days off
and I was treated in a nice way.’ For Anne the only appropriate person to disclose to is her
neighbour: ‘It is the treatment supporter, my neighbour, who knows about the problem and
every secret I have.’ Laurence, a 25 year old mother of two children, told some more people,
but she cannot talk freely with her parents because she does not want to hurt them more than
they already are:
I disclosed to my brothers, sister and two friends. I told my parents that I was
sick, that I have HIV and that I take drugs. I don’t tell them all the details. I
don’t tell them about pain in my body, or about my financial problems. They
feel bad about it, they feel sorry for me but I don’t want them to worry. I can’t
talk freely to my parents...
After saying this she could not speak through her tears because it was a painful subject for
her. Laurence links her physical pain and financial struggle directly to HIV and does not want
to bother her parents with it.
Disclosure of being HIV-positive is hard for PLWHA, as the medical staff of the HIVclinic knows very well. Only one of the 60 PLWHA I talked to said that he had not disclosed
his status to anyone. His reasoning was that his medical condition is private and that people
will start to gossip about him if he reveals it. That means that 98% of these people disclosed
their HIV-status to someone. It was not always the case that they told the person they were
advised to entrust it to. Dante, the policeman, did not tell his wife but he entrusted his friend,
who is a co-worker. Although some HIV-positive persons talked freely with others about their
status, most of them see their HIV-status as something private and only share it with their
partner, closest relatives and friends. Fear of gossip, social exclusion and divorce are issues
limiting disclosure. However, if someone does not disclose his/her status, the social
environment will not be aware that he/she might need help.
Social support
HIV-positive persons on ART might need support like financial support, practical help with
cooking, care and transport and emotional back-up. There are several potential sources of
social support, namely treatment supporters, family, friends, self-organisations, the
community, the HIV-clinic and NGOs.
58
Treatment supporters
Clients on ART in the Kayunga HIV-clinic are asked to bring a treatment supporter who can
join counselling sessions. Counsellor Janet explains who the TS can be and what is expected
of him/her:
Husbands, relatives... Daughters or sons... They should know their role. They
have to know that at exactly eight in the morning and evening, pills have to be
taken and that a few minutes to eight some tea or food should be prepared. The
treatment supporter is supposed to keep an eye on the patient, to help remind
him. When the patient doesn’t feel good, the TS has to take him or her to a
hospital, or the clinic. So a treatment supporter can be seen as a form of social
support for the patient.
The medical officer is convinced that most of the clients on ART at her clinic have a
treatment supporter and she thinks that having one is crucial: ‘Maybe your neighbour can be
your TS. For some of them it has really worked when they had a problem.’ The clinic’s
nursing assistant sees the treatment supporter as someone who can take care of the drug refill
when his/her friend is too sick to travel to the clinic. Counsellor Lindsay tells her clients to
disclose to people who they expect to support them financially or attend to them when they
are sick. For some that is easier said than done, as Lindsay continues:
Some only have a child of nine years old as a treatment supporter and they are
alone at home. They find it difficult. Some clients don’t have supporters. Some
don’t get financial support. Some patients struggle to earn something and
people starve sometimes because they don’t get any help.
Dante has entrusted a colleague police man with the role of treatment supporter: ‘My
treatment supporter is a co-worker, a good friend, he is not infected. He saw that I was sick
and at first he thought that I had cancer.’ Maria’s treatment supporter is a neighbour who joins
her in counselling sessions: ‘A friend of mine is my treatment supporter. At home, my sister
helps too, but my friend is the one who comes with me to the clinic.’ Peace relies on her ten
year old daughter for reminding her to take her pills:
My treatment supporter is my ten year old daughter. [Peace shows a picture]
This is the picture of my child and these are the others. My children know my
status, my sisters, my whole family and my neighbours. It is not a secret to me.
59
In counselling sessions PLWHA are told to create social support. Peace links treatment
support to good adherence: ‘Patients who don’t adhere to their ART might not have a
treatment supporter. I have my girl, she says: mom, it’s time for your pills.’ Just like Peace,
Monica values having a TS to remind her: ‘A treatment supporter is important for reminding
someone to take the pills.’
Treatment supporters are usually partners, daughters or close friends of PLWHA. The
men I spoke to either had their wife or a colleague as TS. Women seem to involve only
female treatment supporters in their ART, and not their partners. HIV-positive children
generally have their mother or grandmother as treatment supporter. The TS sees to it that pills
are taken as prescribed and facilitates the treatment in general. Ten out of 60 interviewees said
that they had no treatment supporter, but in-depth interviews with twenty of these PLWHA
revealed that their definition of having a TS sometimes also included receiving financial help.
So it is possible that the ten people who indicated that they did not have a TS, in fact had one
who did not help financially.
Family and friends
Family and friends can be supportive with practical, financial and emotional assistance,
although support may be limited to mental and psychological support such as, motivation and
understanding. The form of help offered to PLWHA depends on what the people in their
environment can offer. Counsellor Hamida experiences more help from relatives than from
her neighbours: ‘Those people I told? The family helps. But the neighbours, you know, their
income, they can’t help you, but relatives they help.’ Many PLWHA are not only busy with
their own treatment, but have other obligations too, like the care for their children as
counsellor Hamida told me:
My son is now four months, when he is six months, I’ll stop breastfeeding. I
was on PMTCT. Also the baby gets Septrin syrup, after 1,5 year we will test
him. I finished giving birth at four children: I’m on family planning now. My
partner is positive living too. We are both on Septrin.
Leila has similar obligations, but she gets a little help at home: ‘My son brings water from the
borehole, but I take care of food and cooking.’ Leila has three children and her parents to care
for. Her parents live on their own nearby. ‘My mother helps out, but in finance nobody helps.’
Neighbours help Leila when she is sick, they know her status and treat her as they have
60
always done before. ‘There were no changes in their behaviour.’ Peter borrows a bicycle from
friends to get to the clinic, that is all the help he receives. Anne remembers that there was a
negative attitude when she told she was positive: ‘People said that I would die, that the drugs
don’t help, because my husband died of AIDS. People were discouraging me, but I decided on
my own to come for the test. There was a neighbour helping me.’ The neighbour is still very
supportive. Vera, a 36 year old shopkeeper and mother of six, has to work hard to make ends
meet: ‘I am farming and weaving mats. My relatives are far away, so I have no support. I take
care of all my six children. The last born of nine years old was tested positive and is on
Septrin now.’ Yathrib, a farmer, also has two children to care for in addition to her income
generating activities:
I was married, but after I fell sick we separated, he left our three children with
me. I look after them myself, but I get the school fees from my husband. I sell
bananas for a living and I also do some farming. I get some help from my
father and sometimes from my brothers and sisters.
Her relatives help her out and school fees are covered by her ex-partner. Lara only gets help
from her grandchild: ‘I disclosed to my parents, a friend, my daughter and some relatives.
Also my neighbours know. I take care of three children. My granddaughter of twelve years
old helps me when I am sick, otherwise I get no help.’ Monica’s mother helps her out where
she can: ‘Only my mother helps me with washing clothes and she also buys soap and food.’
Elisabeth told me about the moral support she gets from her family: ‘After the HIV-diagnosis
my relatives strengthened me. Thanks to their support I felt okay.’
Children fetching water at one
of the three public boreholes in Kayunga town. Fetching water can be a form of social support.
61
Self-organisations
PLWHA organise themselves and create another form of social support by doing this: support
from peers. The medical officer explains how it works:
They organise themselves through the clinic. Currently we have one big group.
Everybody can become a member after paying a contribution of around 1000
Ush (0,50 Euro). The chairman is at the clinic, he is from the communities.
Counsellor Janet is a member of this club of HIV-positive people, she calls her selforganisation a Positive Club. ‘For us, those who are on ART, we want support. We have
drama-groups, we have our organisations. On Wednesdays we mobilize our groups.’ One of
the main activities of this club is to bring HIV-related messages to communities through
drama by acting, singing and dancing. A play that I have seen conveyed the message that
people should not use injectable medicines if there were pills available, to avoid HIVinfection among other risks. Clubs usually organise weekly meetings, and so does counsellor
Hamida’s organisation:
I found myself positive in 1999 and I joined the Ntenjeru County Network. In
Uganda we join those Positive Clubs for ongoing counselling. Also, you will
find some people preparing herbal drugs. When you’re not on ARVs you can
take that herbal, it helps you to boost your immunity. We usually meet here on
Thursdays.
Preparing herbal medicine for peers and counselling each other seem important activities of
this club. I observed meetings that mainly involved cooking and weaving together. It is more
convenient and pleasant to cook for a group at once and it is combined with small income
generating activities like mat and basket weaving. Additionally, herbal medicine is a source of
income, as counsellor Hamida told me: ‘People like herbal medicine. We prepare it and
people come for it. Those who are not on ART can use it, it can help. However, if someone is
still sick after two days, he/she has to leave it and go to the hospital.’ The medical officer is
not alarmed by herbal medicine use: ‘The traditional healers are there and they say that they
can help relieve the symptoms.’
The clients whom I spoke to in depth are not involved in any organisations besides
churches that offer moral support but no tangible support for their HIV-positive members.
Anne for example knew the clinic’s Positive Club, but is not a member herself: ‘I know the
club, but I am not part of that organisation.’ She did not reveal her reasons for not joining the
62
Positive Club. Hamida and Janet are engaged in two different self-organisations of PLWHA,
but technically they belong to the staff study population. They recount moral support, supply
of herbal medication and peer counselling as the social support they receive from their clubs.
Through these clubs they also cook and work collectively.
The community
The community in which a HIV-positive person lives can help him or her in the ARVtreatment by offering moral support, among other forms of social support. Especially religious
communities can give spiritual support or function as a forum for discussion of AIDS and
ART related topics. The disclosure of one’s HIV-positive status can thus open doors to social
support for PLWHA. On the other side, beliefs and ideas about HIV, AIDS and ART in the
community that differ from the information provided by the HIV-clinic can counteract a
person’s social support. If a community has judgemental ideas about HIV, disclosure can lead
to contra-information on HIV-treatment and stigmatisation of PLWHA. People who are
stigmatised by a community face a huge barrier in getting social support since potential
helpers might be afraid to be around them and PLWHA might even get totally socially
isolated. When community members do not have the facts on HIV and AIDS and how it is
transmitted, this can lead to a lack of community support for PLWHA. Lindsey, a counsellor
told me:
If you get malaria, you get support because they know malaria is a mere
disease. But with HIV, patients can be neglected because people think that
sitting near them would infect them too. And there is stigma. But these days
sometimes they get support because the community has got the facts about HIV
and AIDS: they know how the disease is transmitted.
The stigmatisation of PLWHA and misconceptions on HIV and AIDS are reasons why the
HIV-clinic educates communities when they are on VCT-outreach: to promote social support
for PLWHA. Community support, if it exists for PLWHA in their environment, is mainly
mental support in the sense that community members do not stigmatize PLWHA and do not
spread ghost stories.
In general, counsellor Hamida has good experiences with the community knowing her
status: ‘For me, people are good. Some people don’t believe that I am infected, because
although my husband is dead, I am not sick. Maybe that’s why they don’t fear me.’ Milly on
63
the other hand, says that stigma exists in her community. For her that is a reason to keep her
status to herself and only a few trustees.
In my area there is a stigma on HIV. I know a man who is positive and people
talk about him. He behaves badly: he is using schoolgirls, wives... If I disclose
too, people might take me as that man and think that I am behaving in the same
way. They think that positive people behave badly and I don’t want them to
think that about me.
Jill does not encounter prejudices and she is not associated with immoral behaviour: ‘My life
since that I found out my status? I am treated the same as before.’
Social support for PLWHA can take a form that is undermining treatment adherence.
There are people claiming that they can cure HIV and AIDS, thereby making ARVs
redundant. This help is often meant to do well. Hamida has been offered this kind of help:
There are many who say that they can cure AIDS, but I don’t believe it. Also
the ‘saved ones’, they say that Jesus cures AIDS. Yesterday I spoke to a man,
he told me of a nephew who was on drugs, after some time he became saved
and stopped drugs. And now he is going to ‘cure’ me from AIDS. You see? I
don’t believe it.
In counselling sessions religion is encouraged but the counsellors advise against stopping
ART. Going to churches or mosques is promoted because religious communities can offer
social support. Peter feels supported by his community and he feels free to talk about HIVrelated topics:
I am a chairman of the village counsel, so I always advise people to come for
testing, I talk about the treatment, how it is free of charge, how it has improved
my life. I am a mobiliser of the church and when they ask me I talk about the
virus and the treatment there. I also go to schools. In my community they
accept HIV, they don’t isolate or stigmatize me and they are still close to me.
Peter informs others on this topic and people either come to him or invite him over. He says
that stigma is not an issue for him, and he thinks that his community is supportive. In general,
communities do not seem to offer PLWHA other support than moral support.
64
HIV-clinic
The clinic does not offer tangible social support, but PLWHA meet peers there who can offer
moral support and form a good example of living with HIV. Through their counselling
sessions the clinic staff offers moral support and aims at improving PLWHA’s social support.
The nurse explains their way of counselling as follows:
Some get problems but we help them through guiding and counselling. In case
of poor adherence, we ask them for their reasons. Sometimes we have to dig
more until they tell us. During the counselling we ask them to come with
treatment supporters who can help.
When clients have problems and cannot get help from treatment supporters the nurse tries to
link them up to a self-organisation: ‘It can help them to be part of such a group of HIVpositive people who support each other.’ Furthermore, the staff encourages their clients not to
take on a passive role. The nurse told me that the clinic used to support PLWHA by monthly
supplying them with sugar, posho16, ten kilo’s of rice and a litre of oil, provided by an NGO.
Things have changed since then: ‘Now, let us encourage people to work for themselves. They
can still work. Now we say, go back to your usual life.’ The nurse sees a difference now,
people are strengthened by ARVs and they are also working again. The social support
provided by the counsellors of the clinic is mainly limited to guiding and motivation, as goods
are no longer distributed. Peace felt strengthened by the clinic’s staff:
When I came for the test in this clinic, I already thought that it could be HIV.
So when I got the results, I was somehow strong. The medical personnel
assured me that the drugs were there for me. They told me to be brave.
Sitara sees the counsellors as trustees: ‘I disclosed to my sister, my children and the medical
personnel. I didn’t want to tell my mother because she has pressure and she has lost many due
to HIV. I don’t tell people because I fear that people will gossip about me.’ Sitara is not afraid
that counsellors will worry or gossip, she feels free to talk with them.
Support from peers can strengthen PLWHA in their treatment. Being in the clinic
brought Fatima in the same room with other HIV-positive people, which comforted her.
‘Before the test I was in a village, positive results were not usual, or people were dying. I
feared getting tested. But when I came to the clinic, I found peers and I felt encouraged.’
16
Posho is a kind of staple food.
65
NGO’s
Direct help from NGO’s for HIV-positive people on ART at this clinic was only mentioned
twice in interviews and the only two mentioned organisations were MUWRP17 and CAI18.
Counsellor Janet gets her lunch from MUWRP: ‘You know them, MUWRP, they give us
lunch.’ And CAI pays school fees for HIV-positive children and also offers food baskets. The
only HIV-positive person on ART who had help from NGOs, according to my information, is
two year old David. His grandmother told me about the aid he received: ‘Sometimes my
grandson gets porridge and chapattis for free. When David was found positive, CAI visited
the home. They gave millet flour, maize flour, soap to clear the skin and even cooking oil.’
PLWHA indicate increased costs since they started ART and they often say that they
need support. Most of them entrust their status and medicine use to someone close to them,
like a relative or a neighbour, and many of them receive either psychological or practical
support in return. Out of 60 persons on ART, 36 people indicated to receive some tangible
forms of help from others like money and food. The remaining 24 received only moral
support or no support at all. Numbers on this difference are not available from the interviews.
This because the interviewees, both men and women of different ages, who said not to receive
support often did not count the moral support they potentially received as social support.
Eight of the twenty in-depth interviewed PLWHA said that they did not receive support at all.
The lack of tangible support does not seem to be caused by stigma, as all eight informants did
not indicate being stigmatized. One of them, Sitara, only told a few people because she feared
stigma.
17
18
Makerere University Walter Reed Project
Child’s Advocacy International
66
Chapter 6: Counselling, social support and adherence; conclusions and
recommendations
This chapter discusses the role of counselling in social support and the ways in which
different forms of social support influence the ART-adherence of HIV-positive people in
Kayunga from both a theoretical and an empirical perspective. Both the literature and the field
study material offer insights, as will be laid out here. I will conclude this chapter with some
recommendations for organisations working in the field of antiretroviral treatment.
Counselling, strengthening social support and adherence
Good ART provision
According to literature on ART, the best way to provide treatment to PLWHA is to offer free
ARVs for life with informed consent of the person receiving treatment. Additionally, free
treatment of opportunistic infections and regular CD4 and resistance testing should be
integrated in ART, just like counselling is part of good care. Counselling should take place to
explain HIV and AIDS, the ways of infection and methods of prevention. Living positively,
safe sex, the effects of ARVs and the importance of adherence should also be discussed in a
high-quality counselling session. In addition, side-effects of ARVs and ART conflicting
substance use should be addressed and care should be taken to create mutual trust and
privacy. Besides offering information to their clients, counsellors offer psychosocial support
and encouragement for optimal ARV-adherence and promote disclosure and treatment
supporters. A social environment that does not stigmatize HIV-positive persons and that
offers social support when it is needed by PLWHA is ideal for ART-adherence (UNAIDS
2004:2; Hardon et al. 2006:118, 292; Barnett & Whiteside 2006: 363-369).
The good practice of ART provision in Kayunga
The reality of ART in Kayunga often comes close to the theoretical best practice. The
governmental Kayunga hospital offers free ARVs to clients who are eligible according to
WHO standards. Furthermore, drugs for opportunistic infections are offered for free. The
clinic provides monthly drug refills and these refill appointments are used to carry out health
check-ups and counselling sessions with individual PLWHA or together with their treatment
supporter. Moreover, CD4-counts are done twice a year. The clients of the HIV-clinic
67
appreciate that improvements, side-effects and infections are monitored by health workers.
Individual ART counselling in Kayunga Hospital provides information on ART and positive
living and the clients seem in fact to implement the knowledge. In adherence counselling the
remaining tablets are counted and health, side-effects and adherence related problems are
discussed. HIV-positive people on ART indicate that their drugs have been changed after
side-effects were reported and that opportunistic infections (OI’s) are treated. The clinic staff
also does community sensitizing when they go on VCT-outreach in villages, three times a
month. This entails group-counselling (education on HIV, AIDS and ART), testing,
individual results counselling and potentially referral to the hospital. PLWHA appreciate that
their community is informed, to fight the stigma on HIV and AIDS and potentially increase
their social support.
The adherence rates of clients on ARVs at Kayunga Hospital were hard to measure. I
made an estimation based on the counting of remaining pills, asking PLWHA about pills
taken in last two days and their medical files: 93% achieved 95% or higher adherence.
Ssewaya’s preliminary conclusion is 90.1% (Ssewaya 2007) and the medical officer’s 80%.
Generally it can be concluded that ARV-adherence seems high at the HIV-clinic.
Counselling influences ART-adherence positively through informing clients on ARVuse, offering moral support and promoting disclosure and social support. Due to the
information on the virus and treatment, clients on ART in Kayunga are motivated to adhere to
their ART. They do not want the virus to regain strength and fight their immune system and
they are informed on how to use drugs optimally to avoid that. HIV-positive persons realize
through counselling that they can live with HIV or AIDS and how ARVs can help them if
taken correctly. Counsellors advocate status disclosure because keeping one’s status a secret
lowers adherence because then pills cannot be taken when others are around. Having a
treatment supporter improves adherence, because pills and appointments are more easily
remembered. For this reason counsellors try to persuade their clients to bring someone with
them to the clinic. Counsellors also advocate self-organisation of PLWHA; in counselling
sessions the clients are told about opportunities to join clubs for HIV-positive persons. Those
clubs offer mental and practical support (social support) of peers. Peers who respond well to
ART motivate others to adhere to ARVs.
Social support comes in various forms: treatment support is a form of social support in
which a person from the PLWHA’s direct environment helps remembering to take pills and
go for refill, joins counselling sessions in Kayunga hospital and helps getting transport or
pills. Then there is also the support of family, friends and organisations, which can take the
68
form of moral/psychological support or financial help. Moral support can take the form of a
non judgmental attitude and motivation in treatment. Financial support can be the payment of
school fees. Additionally, practical help in giving food or arranging transport and activities
like cooking or caring for PLWHA are forms of social support. Social support is linked to
higher adherence because HIV-positive people do not have to hide their medication or clinic
visits, they can be reminded of taking pills or going for refill and they can be helped in
financing transport to the clinic in Kayunga, getting food, etc. All these forms of help enable
people on ART to take their pills according to plan and to turn up for appointments at the
clinic for medication refill, health check-ups and ongoing counselling.
ART counselling sessions offer moral support and are used to advocate and facilitate
PLWHA’s disclosure and social support. Partners and treatments supporters of HIV-positive
persons are invited to come to the clinic and join sessions. Moreover, information is given on
peer groups that clients can join. Importantly, counsellors sensitize communities on facts
about HIV and AIDS and HIV-infection when they go on VCT-outreaches in villages in the
district. They also use these group-counselling opportunities to sensitize communities on
social and practical needs of PLWHA like moral and practical support. This good practice in
addition to the individual ART counselling helps fighting the stigmatisation of PLWHA and
thus indirectly helps them in their disclosure and social support.
Shortcomings in Kayunga
Although ART provision in Kayunga is going well, not everything happens according to the
ideal practice in literature. There are some problems like inadequate drug supplies, lack of
testing for resistant viruses, too little space for counselling and long waiting times.
ARVs are always in stock, but there has been a shortage which led to rationed refills
for a couple of weeks in early 2007. This resulted in increased transport costs for those
PLWHA who had to come back shortly for additional drugs. Some drugs for opportunistic
infections are often out of supply, and although clients can get them at other governmental
clinics for free, travelling to those places induces costs and when the drugs are bought in
private clinics they have to be paid for. There is also room for improvement in testing. I have
not heard of tests being done at Kayunga hospital to monitor for resistant viruses, something
that is very useful when first line ARVs do not help anymore and second line ARVs can offer
a solution. Another problem pointed out by both the clients and the clinic staff is the small
number of counselling rooms in the clinic; this contributes to the long waiting times and lack
69
of privacy. The waiting times in the clinic are approximately five hours on average and the
clients are sent to various waiting lines if they need additional drugs. During this time people
have to eat, which costs them extra money and they cannot engage in food- and income
generating activities for a day.
Stigma continues to be a difficulty in the communities of some HIV-positive people
on treatment in Kayunga hospital. A few PLWHA experience stigmatisation and a lack of
social support and treatment support. Especially women experience stigmatisation when their
husbands divorce them (5%) or when a relative withdraws support (5%). Lack of social
support is a bigger problem, 24 (40%) out of the 60 interviewed clients of the HIV-clinic
indicated that they did not get any help from others. However, none of these 24 people
indicated that stigma was the reason for the lack of help. One of these 24 people who said that
they received no support indicated her fear of stigma as a reason for disclosing her HIV-status
to just a few people and not more. Not everybody indicated to have a treatment supporter,
13% of the respondents said they were alone in their treatment. Furthermore, even though the
clinic staff promotes self-organisations of PLWHA, the respondents did not mention being a
member of such a club. Following nutritional advice is a problem for many HIV-positive
persons because of food shortages in 23% of the households and getting finances for transport
is a struggle for 21% of the HIV-positive persons on ART. Mosquito-nets to prevent malaria
were needed by 15% of the clients of the HIV-clinic.
ART-adherence and anthropological concepts
In the line of thinking of Foucault (1980:176), Desclaux (In Castro et al. 2004), Baer et al.
(2003) and Farmer (2001), the use of ARVs in Kayunga is influenced by politics and
economies. Gender inequality and poverty could then, for example, reduce access to ART and
social support for female, poor PLWHA, making adherence to ART a bigger challenge for
them than it already is for men and the wealthy. Looking around in the narrow waiting area of
the HIV-clinic in Kayunga on any given day you would probably see more women than men
and, although every one has put on his or her best clothes, poverty. Most clients of the clinic
are farmers or petty traders with limited resources from the surrounding villages. In rural
Uganda women are expected to be submissive and therefore lack (political) power. Still these
people on ART manage to adhere well to their treatment and they do so better than
emancipated HIV-positive people on ART in the powerful ‘north’ (Crane et al. 2006). In
theory, this seems to be contradictory. The explanation for this discrepancy is to be found in
70
social support for PLWHA, the agency of people on ART and political commitment of the
Ugandan government.
Structures like governmental ART programmes, local economies (poverty) and social
discourses (stigmatisation of PLWHA) might constrain an individual’s freedom of choice and
action, here called agency. Individual agents, like persons on ART, can manoeuvre and
manipulate their fate depending on the context: there is always a level of agency. Although
ARV-programmes generally try to motivate high ART-adherence, a client’s poverty and fear
of stigma create a tension field. Agency here is the negotiation of HIV-positive persons on
ART between health care structures, economic power structures and powerful social
discourses. Since ART-adherence seems to be high at the HIV-clinic in Kayunga, one could
say that it means that the structure of the ARV-programme is an enabling variable for agency.
Due to the good quality, the ART provision can simply be more powerful than constraining
variables of poverty, stigmatising discourses and gender inequality. However, it is the agency
of the clients that makes their ART the success it seems to be. Morally supported by
counselling, people on ART maximize their food- and income generating activities and
mobilize their partners, close relatives and friends when they need help. By doing this, they
create the opportunity for themselves to take their ARVs according to the guidelines for
optimal ART.
In most Ugandan cultures, women usually have a submissive role in households.
According to Farmer (1999; 2001) power is gendered and so are poverty and care giving.
Women usually carry the burden of poverty, HIV-infections and care for children, the sick
and the elderly. Being on ART could, from this point of view, be more difficult for them than
it already is for men. In addition, social support could be more available for men than for
women. I saw in the clinic that there were more women on ART than men. This is not only
explained by higher HIV-prevalence rates among women, but also by better access to VCT
through antenatal care and RTC (Routine Testing and Counselling). The access to testing and
treatment through RTC is easier for women because it bypasses restraining gender relations
and decision making dominated by men and in-laws. Men seem more reluctant to get tested
for reasons unknown to me, also on VCT-outreaches in villages I saw more women turning up
to get their blood tested. When a client starts on ART, adherence is important. Differences in
adherence between men and women were not visible for me. I also had the impression that
men on ART not necessarily receive more social support than women; in several cases both
male and female PLWHA had to take care of children and elderly and received no help in
doing that.
71
HIV-positive people are stigmatized when AIDS is seen as a disease that originates
from immoral behaviour in the dominant discourse (Shoveller 2006). Furthermore, fear and
lack of information cause stigmatisation of people. Only one informant indicated that fear of
getting stigmatized and discriminated by the community was the reason for not disclosing her
status. I found that the stigma on AIDS still exists locally in Uganda and that feared stigma
can cause PLWHA to keep their status more to themselves, which also affects social support.
The disclosure of the HIV-status might enhance social support because it clarifies the
situation and needs of PLWHA to potential supporters. On the other hand, for HIV-positive
persons who do disclose, stigmatisation can lead to social isolation and being cut off from
social support and this will make adherence to ART difficult. Social isolation occurs when
people from a HIV-positive person’s environment do not want to be associated with a HIVpositive relative or friend and avoid this person or exclude him/her from their social lives.
Especially women told me that their partners had left them; I did not hear from men that their
partners had left them. A reason for the fact that women do not tend to leave their husbands
could be found in the gender relations: more often women have financially dependant
positions within a household and the care for the children. I did not hear of cases in which
people were totally isolated. PLWHA often disclose to fellow clients for example in the clinic
and this can create a potential source of support that is very stimulating for treatment
adherence. In Kayunga it is mostly moral support that peers have to offer each other,
something that they value highly and consider as a major motivation for good adherence.
HIV-positive people have, often without deliberately meaning to, generated social
capital in various forms and scale in their social environment. The material and nonmaterial
support HIV-positive people once have offered to their relatives and friends when they were
in need, can theoretically be reciprocated. It depends on the individual how much and what
kind of social capital they have built. This social capital can function as an informal social
security system. When people on ART encounter problems, they can activate this system to
get social support (Barnett & Whiteside 2006). They can get help like money and goods,
moral backup and care from family members, peers, a religious community, an employer, a
clinic and so on (Hardon et. al. 2006; Farmer 2001).
Family members are often approached when support is needed, like in paying school
fees, food, or psychological support. These forms of social support motivate PLWHA
psychologically in their ART and help them to get the means to follow the treatment. Peer
groups like the KADNET in Kayunga and Netconet in the neighbouring Bukolooto offer great
mental support when a client is tired of the treatment in general. Moreover, by staying
72
socially active, depressions can be fought in an early stage. In some stages of the disease,
when opportunistic infections are still attacking and CD4-counts are low, the example of
peers who are longer on ARVs can work well for adherence. The interviewed PLWHA did
not make use of self-organisations, but HIV-positive staff members of the clinic did and
found them very supportive. In Kayunga, NGO’s like MUWRP and CAI offer some social
support to persons on ART. Although it was not mentioned frequently, they appear to help out
some people with their food supply. Churches offer no material help, although they
occasionally give moral support to HIV-positive people on ART and create a platform for
discussing HIV, AIDS and ART with community members. I have not heard of employers
actively organising support for HIV-positive employees. One employer’s friendly attitude and
flexibility in giving days off was interpreted as a form of support in starting ART. The HIVclinic offers through counselling a listening ear, encouragement and understanding, something
that the clients themselves see as moral social support.
The high adherence of the clients on ART in Kayunga hospital beats the odds since the
persons concerned are mainly poor and relatively powerless people. It is social support in its
many forms that strengthens their agency and motivates them to use that agency to adhere to
ART the best they can. The emotional support from peers, medical workers and relatives help
to keep PLWHA motivated to take their ARVs and material support gives them the means to
live positively and to keep provided with counselling and drugs. People on ART in Kayunga
hospital generally are not politically or economically powerful. There is yet another force
creating an environment that enables them to access ART and adhere to ARVs. It is the
political determination of the Ugandan government that secures ART provision and
compliance with the medical system. Therefore Farmer’s (2001) assumption that politics and
bigger powers on a macro level influence the use of ARVs on a micro-level is reflected in this
case study, in a positive way: individuals are empowered on an equal basis.
73
Recommendations for better ART-adherence
ART services in Kayunga
The following suggestions are intended to improve ART provision services in Kayunga and
they are mainly based on ideas proposed by the respondents interviewed in this research and
observations carried out in the HIV-clinic.
1. Create a bigger waiting area and more counselling rooms with the required equipment and
furniture. More space in the hospital wing where the HIV-clinic is held ensures more
privacy for the clients and, when combined with more manpower, shortens waiting
times19.
2. Introduce a numbered system ensuring a ‘first come first serve’ policy and use the same
order of numbers in the waiting lines for the drug dispensary.
3. Increase the supplies of those drugs for opportunistic infections that often run out of stock
and refill them more frequently.
4. Provide PLWHA with mosquito-nets. These nets can help them to prevent malaria, but
they often do not have the means to purchase them.
5. Enable PLWHA with high ART-adherence over a longer period of time to collect their
ARVs for a couple of months at the time to reduce transport costs.
6. Link PLWHA on ART with financial problems who can work to micro-credit programs in
the district aimed at increasing income generating activities.
7. Hand out food baskets at the start of ART to those PLWHA with food supply problems
who are not able to work.
8. Start home care ART-programs for PLWHA who are not able to travel to the HIV-clinic.
9. Enable PLWHA on ART to resume their treatment in a facility close to their home, by
transference on request.
10. Take care to avoid stigma and preferably address stigmatisation of PLWHA and inform
the public in public campaigns concerning HIV or AIDS.
11. Sponsor self-organisations of PLWHA to promote themselves more effectively for
potential new members.
19
Possibly the Ugandan MoH is already planning to extend the HIV-clinic, however, this is not confirmed yet.
74
General ART services in resource-limited settings
The following recommendations are meant for African ART services in general. Suggestions
two, three and four are based on good practices in Kayunga.
1. Ensure a constant affordability and accessibility of ART. Provide ART for free and keep
ARVs and drugs for opportunistic infections well stocked.
2. Train the entire HIV-clinic staff in adherence counselling and ensure good quality of
counselling. An interactive and friendly way of counselling gives the PLWHA a chance to
ask questions and discuss adherence related problems.
3. Emphasize disclosure during counselling sessions and motivate PLWHA to draw on one’s
social support. Stimulate PLWHA to bring at least one trustee, who can become the
treatment supporter, to the counselling session.
4. Involve the community in VCT and ART and informed them on HIV, AIDS, ART and
needs of PLWHA.
5. Create enough space in the waiting area and counselling rooms with the required
equipment and furniture. More space ensures more privacy for the clients and, when
combined with adequate manpower, shortens waiting times.
6. Introduce a numbered system ensuring a ‘first come first serve’ policy and use the same
order of numbers in the waiting lines for the drug dispensary.
7. Provide PLWHA with mosquito-nets when they do not have the means to purchase the
nets themselves to prevent malaria.
8. Enable PLWHA with high ART-adherence over a longer period of time to collect their
ARVs for a couple of months at the time to reduce transport costs.
9. Link PLWHA on ART with financial problems who can work to micro-credit programs
aimed at increasing income generating activities.
10. Hand out food baskets at the start of ART to those PLWHA with food supply problems
who are not able to work.
11. Start home care ART-programs for PLWHA who are not able to travel to the HIV-clinic.
12. Enable PLWHA on ART to resume their treatment in a facility close to their home, by
transference on request to existing clinics close by or by creating new clinics.
13. Take care to avoid stigma and preferably address stigmatisation of PLWHA and inform
the public in public campaigns concerning HIV or AIDS.
14. Sponsor self-organisations of PLWHA to draw potential new members.
75
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Annex 1 Problem analysis diagram
Health service
Personal
Disease &treatment Socio-cultural
Economic
Factors
Factors
Factors
Factors
Factors
Lack of
proper
counselling
Female
gender,
youth, low
education
level
Drug/treat
ment
related
variables
Poor social
capital
Poor
financial
support
Low
hospital
resources
Low social
status
Disease
related
variables
Low social
support
High
treatment
related
costs
Long
waiting
times
Low
accessabili
ty, long
distance
Contra
information
disease &
treatment
No
awareness
importance
adherence
High social
stigma &
low
disclosure
High cost
of care &
low patient
income
Sub optimal
adherence to
ARVs
80
Low
availability
of food,
family
income
Busy
working
schedules/
position in
family
Annex 2: Background characteristics informants
In-depth interviewed PLWHA on ART at Kayunga Hospital
Alias
Leila
Peter
Anne
Elisabeth
Monica
Peace
Milly
Jill
David
Grandmother
Dante
Maria
Lara
Laurence
Jasmina
Yathrib
Mohammed
Vera
Sitara
Fatima
Naima
Sex
F
M
F
F
F
F
F
F
M
F
M
F
F
F
F
F
M
F
F
F
F
Age
44
45
30
50
28
30
32
31
2
?
53
31
45
25
43
32
39
36
34
38
37
Profession
Nursing ass.
Farmer
Cook
Farmer
Farmer
Farmer
Shopkeeper
Farmer
Partner
No
Yes, HIV-positive too
No, widow
No, widow
No
No
Yes, suspected positive too
Yes
Number of children
3
15
3
8
2
2
12
6
Farmer
Policeman
Farmer
Farmer
?
Tailor
Farmer
Fisherman
Shopkeeper
Shopkeeper
Beauty salon
Farmer
No
Yes
No, widow
Yes
Yes
No, widow
No
Yes, HIV-positive too
Yes, HIV-positive too
No, widow
Yes, suspected positive too
Yes, suspected positive too
6 grandchildren
4 in care
1
3 in care
2
3
3
6
6
2
3
3
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Annex 3: Data collection tools
A) Topic list for interviews with PLWHA using ARVs
Main question: “Can you describe me your life after you were diagnosed with HIV/AIDS?”
1. Sex, age, profession and tasks, education level.
2. People living with in household, distance from facility.
3. Date of HIV-diagnosis, date of start ART.
4. Personal health issues related to HIV/AIDS and ARVs.
5. Assessment adherence and non-adherence (medicine schedule, other medications,
missed doses and reasons, has treatment changed, missed appointments hospital,
skipped/stopped ART, reason and results).
6. Knowledge of HIV/AIDS.
7. Knowledge of treatment (ARVs, ART, herbs, traditional medicine, spiritual healing,
prayers and their perceived benefit).
8. Opinion on HIV/AIDS and treatment.
9. Experiences with ART (adherence, adverse effects, pill burden, lack of food, lifestyle
issues).
10. Opinion on health care workers and quality of care (privacy, respect, confidentiality,
being listened to, time spent with health worker, waiting time, integration other
services).
11. Opinion on counselling (importance of adherence, effectiveness of counselling,
support to help adhere better to ART).
12. Disclosure of HIV-status (why, to whom, reactions).
13. Social support (different types of help, practical and psychological, available in
community, family, friends, workplace).
14. Costs (transport, registering, ARVs, losing income, other costs, other affected
activities).
15. Discrimination, stigma, different treatment by others due to HIV-status.
16. What could be done to help people to adhere more easily to ART?
17. What are the reasons for non-adherence and good adherence?
18. Self report of medication taken in the last two days.
B) Topic list for interviews with health workers and counsellors
Main question: “How do you counsel PLWHA on ARVs?”
1. Sex, age, profession, role in ARV-programme, involved since.
2. Treatment guidelines HIV/AIDS management.
3. Availability prescription drugs, laboratory and diagnostic support services.
4. Procedure new ARV-user or switch in treatment.
5. Information and preparation of ARV-users.
6. How adherence is determined, strategies to monitor.
7. Treatment-support.
8. Other support strategies for adherence.
9. Main challenges in supporting clients to adhere to ARVs.
10. How is social support strengthened by counselling?
11. What could be changed in facility?
82
C) Topic list for interviews with NGO staff
“In what way are activities of this NGO supporting PLWHA on ART in Kayunga?”
1. Strategies to encourage good treatment adherence
2. Strategies to improve adherence
3. Existing stigma and social support and intervention
4. Opportunities for improvement in current programme
D) Topic list for observations HIV-clinic
1.
2.
3.
4.
5.
6.
7.
Setting and people
Sanitary condition
Privacy PLWHA
Attitude towards PLWHA by others
Notices of information on ARVs and adherence
Storage of ARVs
Visible availability of food
E) Questionnaire for interviews with PLWHA using ARVs
1. Date:
2. Understanding of English:
3. Sex:
4. Name:
5. Age:
6. Occupation/profession:
7. Education level:
8. Residential area:
9. Distance from home to clinic:
10. Since when are you on ART?
11. Is it difficult to take all the pills or not?
12. Are you on treatment alone or together with partner?
13. Do you have a treatment supporter?
14. Date next refill at clinic:
15. Are you sick, or bothered by ARV side-effects? Elaborate.
16. Did you tell others about your HIV-status?
17. Who generates income for your household?
18. How is the food supply at home?
19. How are transport costs covered?
20. Do you get help from others: food, money, transport, care, cleaning and cooking?
21. Do you have to care for others, children or elderly? How many?
22. Do you have any questions or remarks for the interviewer?
23. Are you okay with a follow-up interview?
Annexes from Hardon et al. 2006 are used for the composition of the above topic lists.
83