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The role of HIV testing, counselling, and treatment in coping with HIV/AIDS in
Uganda: A qualitative analysis
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To cite this article: Barbara Nyanzi-Wakholi , Antonieta Medina Lara , Paula Munderi , Charles Gilks & on behalf of the
DART Trial Team (2012): The charms and challenges of antiretroviral therapy in Uganda: the DART experience, AIDS Care:
Psychological and Socio-medical Aspects of AIDS/HIV, 24:2, 137-142
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AIDS Care
Vol. 24, No. 2, February 2012, 137142
The charms and challenges of antiretroviral therapy in Uganda: the DART experience
Barbara Nyanzi-Wakholia*, Antonieta Medina Larab, Paula Munderia and Charles Gilksc on behalf of the
DART Trial Team
a
MRC/UVRI Uganda AIDS Research Unit, Entebbe, Uganda; bCentre for Research on Health and Social Care Management,
Bocconi University, Milan, Italy; cThe Joint United Nations Programme on HIV/AIDS (UNAIDS), New Delhi, India
(Received 14 January 2011; final version received 7 June 2011)
Antiretroviral therapy (ART) improves the quality of life of people living with HIV/AIDS. However, adherence
remains a challenge. A total of eight focus group discussions (FGD) were conducted with participants from a
randomised controlled trial that monitored strategies for managing ART in African adults: Development of
Antiretroviral Therapy. All FGD participants had received ART for at least one year. Perceived benefits of ART
were key motivators for adherence. These benefits included improved physical health, restored self-esteem,
acceptance in the community and hope for a longer and healthier life and reduced fear of HIV/AIDS-related
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death. Barriers to adherence included a high pill burden, ART side effects and socio-economic constraints,
including lack of food and safe water for taking the pills. Visible ART side effects and involvement in an
exclusively HIV/AIDS clinic could expose their HIV status, thus exacerbating stigma. Gender and socio-
economic differences were found in the variety of strategies employed to ensure adherence. ART was perceived as
improving the overall quality of life of recipients; however, it is crucial for ART programmes to be gender and
socio-economic cognizant in order to enhance adherence to a lifelong therapy.
Keywords: adherence; antiretroviral treatment; focus group discussions; gender; HIV/AIDS; side effects;
Uganda
life changed since you started taking ART? (3) What medicine, I recovered and the children were happy to
challenges emerged as a result of taking ART? see me. (Female, Group3)
The discussions were audio recorded, transcribed
They provided advice on HIV testing and treatment,
verbatim and translated to English. Codes were
and exchanged their identity as ‘‘AIDS sufferers’’ for
developed in relation to the study objectives, and
that of value as HIV advisors.
thematic content analysis was managed using NVIVO
2.0. Information that did not fit under the initial Some people would never admit that they are infected
codes was coded under the ‘‘emerging themes’’ however after seeing how sick my husband was, and
category. Associations between themes were estab- how well he has recovered they approach him, and
lished, and data were compared by gender. ask him to bring them to the clinic so they too can get
the same treatment. (Female, Group1)
Uganda Virus Research Institute, and the Uganda I had lost hope and didn’t think that there was any
National Council for Science and Technology in purpose of living. My life had ended. However during
Uganda and the Liverpool School of Tropical Med- the time that I have spent at this clinic, my life has
icine, Ethics Committee in the UK. been restored. . . .I now have a future and I am going
ahead with the projects that I had laid off. (Male,
Group3)
skipping meals, having multiple sexual partners and One strategy for the women was to boil water, cool it
unprotected sex. and fill bottles that they carried along with meal
leftovers. Men were more likely to buy bottled water
There are times I am tempted to take alcohol but my
and a snack.
wife knows it is not good for one who is taking this
medicine so she insists that I do not take it. I have I had to travel to a far place so I carried my medicine
managed not to take alcohol because of her insis- with me. I boiled water, bought a cluster of bananas,
tence. (Male, Group2) threw it in my bag and went on my way. (Female,
Group 4)
The fear of deteriorating to their pre-ART health
condition was repeatedly described as a key motiva- Unlike the women, some men reported swallowing
tor for adherence. pills without drinking water and emphasised that the
absence of safe water was not an excuse for not taking
I know how sick I was so I have to take the medicine.
These pills are my life! They are life! (Male, Group2)
the pills.
I often carry my pills with me. I often swallow them
Testimonies and observation of ART recipients
without taking any water. You cannot always get the
whose health improved was a motivator.
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Women described a number of excuses for attending If you were once very sick, got medicine and then
the clinic such as sick children, illness, emergency calls recovered, though turned black, you would not mind
from distant relatives and even the unquestionable it. You would be proud about it because you are
better. For one who had once lost hope and has now
traditional clan gatherings evoked by gods.
recovered to this stage, the change in skin colour is
While some described being abandoned by kin no big issue. (Male, Group1)
when they were ill, others spoke of the exceptional
care they received. However, some reported that
those who provided material and financial support Discussion
withdrew it when their health improved. These results reveal factors that challenge ART
In the past they used to care a lot for me and even recipients to adhere to treatment, and demonstrate
care for my children. Now that I am strong and how to enhance adherence. Although medical profes-
better, they leave me to provide for myself. (Male, sionals use clinical markers to assess treatment
Group2) success, these were not necessarily the perceived
benefits of ART from the recipients’ perspective.
The perceived benefits included improved physical
Dealing with ART side effects health, appearance and self-esteem, acceptance in the
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Participants received detailed information on the community, restored hope and overcoming the fear of
possible side effects of ART at enrolment and this death. Medical personnel need to acknowledge and
prepared them for the onset of side effects. embrace the recipients’ perceptions. Conversely, in-
formation on how the immune system is affected by
We were warned that some people would get drug ART should be reiterated to recipients, as this has
reactions. This helped me not to worry when I fell
been proven to encourage adherence and positive
sick. (Female, Group2)
living (Garcia, Ponde, & Lima, 2005).
The most common side effects were nausea, vomiting, As revealed in other studies, the need to adhere to
headaches, dizziness, body odour, skin rashes, dar- treatment was a personal responsibility generated by
kening of the skin, nails, palms and feet, increased/ the need to live a longer and healthier life (Lewis,
decreased appetite and men reported increased/de- Colbert, Erlen, & Meyers, 2006).
creased sexual desire. Our findings indicate gender and socio-economic
Drinking a lot of fluids and resting were claimed differences in adherence strategies. While men em-
to reduce dizziness, while eating a snack or meal ployed items of monetary value to enhance adher-
before swallowing pills controlled nausea. However, ence, women employed non-monetary means
including scheduling pill taking along routine activ-
many participants reported not having enough food
ities, medicine companions and carried home-made
because the illness had debilitated them leaving them
safe water and meal leftovers to tame the ART
unable to meet their basic needs.
associated increased appetite. Men appear to cope
A number of strategies were employed to disguise
better with certain aspects of the treatment such as
the visible side effects. Long sleeved clothes, ankle
swallowing pills in the absence of water and/or food
reaching skirts and trousers were worn to cover
as reported elsewhere (Côté, Godin, Garcia, Gagnon,
the scarred skin. They wore boots to hide darkened
& Rouleau, 2008).
feet and women reported wearing dark nail polish to These findings support the role of medicine
cover darkened nails. companions to remind about pill taking and check
I had never worn nail polish in my life. However against detrimental behaviour (Foster et al., 2010;
these days I have to wear dark nail polish because my Ssali et al., 2010). Providing medicine companions
nails are black. (Female, Group1) with information and counselling skills could enhance
their role. It should however be noted that not all
While some participants worried that the visible ART participants had medicine companions, and research
side effects could expose their status, others were not has shown that some ART recipients prefer not to
embarrassed by their HIV status. have one (Liechty & Bangsberg, 2003).
Visible treatment side effects potentially exposed
I see many people with dark feet and nails and I
know they are taking ART. They do not need to tell
the recipients’ HIV status, which has been reported as
me. (Male, Group1) reason for non-adherence and treatment discontinua-
tion (Johnson et al., 2005; Lee, 2006). Whilst side
On the whole, the improved health and quality of life effects affected their daily lives, participants in this
was felt to be worth the side effects. study perceived them to be an acceptable trade-off for
AIDS Care 141
a better quality of life. Providing information on patients’ non-adherence to HIV medications. AIDS
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Katabira, E.T., Mugyenyi, P.N., & Bangsberg, D.R.
(Garcia et al., 2005). These findings support other
(2005). Adherence to HIV antiretroviral therapy in
studies in calling for the adoption of simple regimens
HIV Ugandan patients purchasing therapy. Inter-
with fewer pills, doses and side effects (Atkinson & national Journal of STD & AIDS, 16(1), 3841.
Petrozzino, 2009; Parienti, Bangsberg, Verdon & Clark, R.A., Wilcox, R., & Besch, L. (2004). Antiretroviral
Gardner, 2009). therapy in the antiretroviral experienced patient.
ART programmes in Africa provide a strong American Journal of Medical Science, 328(1), 1016.
association between adherence and financial con- Conway, B. (2007). The role of adherence to antiretroviral
straints. Participants in this study received free therapy in the management of HIV infection. Journal
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potentially challenge adherence including work S18.
Côté, J., Godin, G., Garcia, P.R., Gagnon, M., & Rouleau,
absenteeism, lack of food and safe water, side effects,
G. (2008). Program development for enhancing ad-
pill burden, transport costs and the possible exposure herence to antiretroviral therapy among persons living
of their HIV status, as reported elsewhere (Kip,
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