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African Health Sciences
Makerere University Medical School
ISSN: 1680-6905 EISSN: 1729-0503
Vol. 8, Num. 1, 2008, pp. 13-19
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African Health Sciences, Vol. 8, No. 1, March, 2008, pp. 13-19
The effects of enhanced access to antiretroviral therapy: a qualitative study of community perceptions in Kampala city, Uganda
Lynn Atuyambe1,2,*, Stella
Neema1,3, Erasmus
Otolok-Tanga1,2, Gakenia
Wamuyu-Maina1,2, Simon
Kasasa1,4, Fred Wabwire-Mangen1,4,5
1Behavioural Surveillance Program, Academic Alliance for AIDS Care and Prevention in Africa
2Department of Community Health and Behavioural Sciences, Makerere University School of Public Health
3Department of Sociology, Makerere University
4Department of Epidemiology and Biostatistics, Makerere University School of Public Health
5Academic Alliance for AIDS Care and Prevention in Africa
*Corresponding author: Lynn Atuyambe, Department of Community Health and Behavioural Sciences, Makerere University School of Public Health, P.O. Box 7072, Kampala Fax: 256 41 531807, Tel: 256 41 543872 e-mails:atuyambe@musph.ac.ug, latuyambe@yahoo.com
Code Number: hs08005
Abstract
Introduction: Since 2001, Antiretroviral Therapy (ART) has been integrated as part of the Uganda National Program for
Comprehensive HIV/AIDS Care and Support. If patients take Antiretroviral drugs (ARVs) as prescribed, quality of life is expected to improve
and patients become healthier. It is, however, postulated that scale up of ARVs could erode the previous achievement in behaviour
change interventions. This study examined community perceptions and beliefs on whether enhanced access to ARVs increases risk
behaviour. It also examined people's fears regarding HIV/AIDS infection and the use of ARVs.
Methods: This was a qualitative study that utilized Focus Group Discussions (FGDs) and Key Informant (KI) interviews.
Participants were purposefully sampled. Twenty FGDs comprising of 190 participants and 12 KI interviews were conducted. FGDs were
conducted with adult men and women (above 25 years), and youth (male and female) while KI interviews were held with Kampala City
Council officials, Kawempe Division Local Council officials, health workers and religious leaders. All data was tape recorded with consent
from participants and transcribed thereafter. Typed data was analyzed manually using qualitative latent content analysis technique.
Results: Most participants felt that enhanced access to ART would increase risky sexual behaviour; namely promiscuity, lack
of faithfulness among couples, multiple partners, prostitution, unprotected sexual practices, rape and lack of abstinence as the risky
sexual behaviours. A few FGDs, however, indicated that increased ART access and counselling that HIV-positive people receive
promoted positive health behaviour. Some of the participants expressed fears that the increased use of ARVs would promote HIV
transmission because it would be difficult to differentiate between HIV-positive and HIV-negative persons since they all looked healthy.
Furthermore, respondents expressed uncertainty about ARVs with regard to adherence, sustainable supply, and capacity to ensure quality
of ARVs on the market.
Conclusions: There are fears and misconceptions that enhanced access to ART will increase risky sexual behaviour and
HIV transmission. Information Education and Communication (IEC) on ART use and availability should be enhanced among all
people. Prevention programs which are modified and specific to the needs of the people living with HIV should be developed and
implemented, and should include information on the ability of individuals to transmit HIV even when they are on ART.
Key words: ART, `enhanced access', perceptions, qualitative, Uganda
Introduction
Since 2001, Antiretroviral Therapy (ART) has been
integrated as part of the national program for
comprehensive HIV/AIDS care and support in Uganda. If
patients take Antiretroviral drugs (ARVs) as prescribed,
quality of life is expected to improve as well as make
patients healthier 1-4. Evidence from the industrialised
countries indicates a possibility for the prevention benefits of
ART to be beset by complacency about the threat of
HIV/AIDS which may result in an increase in risky
behaviour and new infections.5-7
There is, therefore, fear that a scale up of ARVs
could erode previous achievements in behaviour change
interventions, especially in poor resource settings. It is
thus feared that there could be an increase in
prostitution, promiscuity, unprotected sex and lack of faithfulness. This study established community perceptions and
beliefs on whether enhanced access to ARVs increases
risky behaviour as well as fears regarding HIV/AIDS
infection and use of ARVs. Currently, the coverage of ART
in Uganda is about 50% and the foregoing
misconceptions may delay the extension of this coverage.
This study is part of the larger two year
project study `HIV Prevention Intervention in the Context
of the Antiretroviral Therapy' funded by the Bill and
Melinda Gates Grant through the Academic Alliance for
AIDS Care and Prevention in Africa. The overall goal of
this project was to understand how to successfully reduce and sustain reduction in HIV incidence and
prevalence in the context of improved access to ARVs and
treatment for opportunistic infections in an African setting.
Methods
This was a qualitative study that utilised focus group
discussions (FGDs) and key informant (KI)
interviews. FGDs refer to a qualitative method that gathers
people of homogeneous background or experiences to
discuss a specific topic of interest to the
researcher.8-10
A moderator who introduced the topic and the aim
of the study guided the discussions. Key informants on
the other hand are people who, because of their position
or experience, have greater knowledge of what is being
investigated than the average person.11 Purposeful
sampling was done to select study participants. This
study was carried out in Kawempe Division, one of the
five divisions of Kampala, the capital city of Uganda.
Kawempe division is divided into 22 parishes and 119 local
council one (villages) with a projected population of
282,000 (52% females and 48% males).12
Participants and procedure
Study participants were recruited from Kawempe
Division, Kampala city. We contacted the local
community network (Local Council chairpersons and
community guides) with whom we visited households
identifying eligible participants. A total of 20 FGDs comprising
of 190 participants (99 males and 91 females) and 12
KI interviews were conducted. Focus groups were
conducted with adult men and women of 25 years and
above. Two of the FGDs were with women and two with men
in that age group. Other FGDs were with adolescents
of between 15-18 years. Two of these FGDs were
conducted with males who were still in school, two with males
out of school, two with female in school and two with
females out of school. FGDs were also conducted
with young persons aged between 19-24 years of which
two were with males still in school and two with males out
of school. Also two of the FGDs were with females
in school and two with females out of school. The
average number of participants in the FGDs was ten 13 and discussions were held at a venue identified by and
convenient to the participants (tree sheds and classrooms
were mostly chosen). Participants were served with a
soft drink but were not paid to participate. Semi
structured interviews (Box 2) were held with KIs who were
considered to have greater knowledge of reproductive
health issues including HIV/AIDS and treatment-seeking
behaviour. The researchers also took advantage of the
KI's position in society as well as their experience. 11 Key informant interviews were held with Kampala City Council officials, Kawempe Division Local Council
officials, health workers, and religious leaders.
Quality control
Back translation technique was used to ensure
consistency of meaning in the FGD
guide.14 The guide was translated from English into the local language (Luganda)
by one group of bilingual research assistants (RAs).
Another group of RAs translated the Luganda version
back to English (Box 1) and it was compared with the
original version. The FGD guide was pre-tested during one
group discussion and thereafter adjusted for the main
field-work. Results of the pre-test are not included in
this article. Research assistants were recruited and trained
to take field notes. All FGDs were tape recorded (with
consent from participants) and transcribed into English.
Participants were guaranteed anonymity and
instructed not to share individual responses with others.
Data management and analysis
Typed text data was analyzed manually using
qualitative latent content analysis
technique.15 Open codes, categories and themes were developed. The major themes
that emerged were: availability of ARVs and risky
behaviour, positive health living for persons whose HIV status
was known, beliefs about HIV as well as fears about ARVs.
Ethical consideration
The study was approved by the Makerere
University School of Public Health Higher Degrees, Research
and Ethics Committee, and Uganda National Council
for Science and Technology (UNCST). Permission was sought from the management of Infectious
Diseases Clinic, and Kawempe Division Community leaders
to allow the study to be carried out in those settings.
Informed consent was obtained from the study
participants after explaining the goals and objectives of the
study, confidentiality safeguards and potential risks and
benefits of the study was fully explained. The informed
consent document was translated into Luganda, the
main local language of the area of study.
Results
Availability of ARVs and increase in risky
sexual behaviour
Most of the FGD participants and KIs revealed that
there was a strong belief that increased access to ARVs
would enhance the spread of HIV. Over half of the FGD
participants, irrespective of their education level, pointed
out that ARVs increased the risk of unsafe sexual
behaviour that would in turn increase HIV transmission. One
key informant expressed this view in the quote below:
Box 1: Focus Group Discussion Guide
- If someone is sick for a long time, (bed-ridden), what care is given? Where do they go for care and
support? What care do they normally receive?
- What type of treatment is usually given to AIDS patients? What type of treatment are people accessing
for people living with HIV/AIDS?
- There is increased talk of ARVs in the country. What do people in this community know about ARVs?
What do you think of ARVs in terms of their role in the fight against HIV/AIDS?
- The government is planning to increase access of ARVs to PLHA. What are some of the problems
regarding use/availability of ARVs?
- What are some of the beliefs or perceptions regarding HIV transmission and prevention now that there
is increased access to ARVs?
- Now that there is increased availability of ARVs on the market, do people perceive HIV/AIDS as a big threat in their midst?
- Given the increased access to ARVs in the country, would you say this has influenced people's sexual
behaviour? What in your opinion is the effect of ARVs' availability and use on sexual behaviour?
Probes:
a. People less concerned about becoming HIV-positive
b. People are less concerned about infecting others
c. People think a person on ARVs cannot infect a partner through unsafe sex
d. Because of availability of ARVS, there is no need of practicing safer sex (condom use etc)
- What should be done to improve the availability and use of ARVs?
- What should be done to make sure that the gains through prevention efforts are not lost due to
complacence?
Box 2: Key Informant Interview
Guide
- In your view, do you think HIV/AIDS is still a big threat in this community?
- Where do most HIV/AIDS patients seek care?
- What type of care is available for HIV/AIDS patients in this community?
- What sort of treatment is usually given to HIV/AIDS patients in this area?
- Currently, there is increased access to ARVs for AIDS treatment in the country. Would you say this has
influenced people's behaviour related to HIV infection and sexual behaviour?
- In order to improve the livelihood of PLHA, what do you think should be provided?
- What are some of the beliefs regarding risk to HIV infection with increased availability of ARVs?
- What prevention measures against HIV/AIDS do people in this area use (probe for condom use, reducing
sexual partners, abstinence, etc.)
- What is the community's attitude towards HIV prevention with availability of ARVs for AIDS treatment?
"When people see that ARVs are now available,
which makes the HIV dormant for sometime, they know they
can now engage in sex knowing that at the end of the day,
before they die, a cure will be available. It looks as if it has
now made people more promiscuous. Before, people knew
that there was no alternative but death. But now, we see
risky sexual activities begin to increase."
(KI, Local Council Official).
It was further reported that increased availability of
ARVs had affected the traditional prevention approach such
as condom use.
"I want to supplement what he has said, the drug
(ARVs) has increased the AIDS transmission rate because in the past people could protect themselves using condoms
but now they no longer protect themselves since the drug
is available." (FGD, Males in-school, 15-18 years).
Some participants felt that ARVs had led people to
reduce on abstinence from sex and their faithfulness
to their partners. ARVs have also led to an increase in
multiple partner relations and reduced condom use,
thus undermining the ABC strategy spearheaded by
Uganda's Ministry of Health.
"HIV transmission will continue to increase as long
as drugs are available. Even though it was me, I can't
abstain because I know there are drugs (laugh) but if there were
no drugs, I would have abstained from sex."
(FGD, Males in-school, 19-24 years)
All FGDs felt that availability of ARVs was likely to
reduce faithfulness between sexual partners. It was
particularly pointed out that the married couples may
stop being faithful especially if they were sure of their
economic ability to purchase drugs for life. Most FGD
participants expressed fear that availability or reduction
in the cost of ARVs could lead people into having
multiple sexual partners.
"If ARVs are more available at reduced cost, the rate
of sexual promiscuity will also increase. If I know that I
can get a drug at 10,000/= why can't I add on the number
of ladies I have?"( FGD, Adult males, 30-50 years)
A few groups reported that because HIV-positive
women can now give birth to HIV negative babies owing to
the prevention of mother to child transmission
(PMTCT) programmes that are in place, this had increased
the number of HIV-positive mothers who want to have
babies. It was argued that HIV-positive women would
lookout for sexual partners to help then conceive, but in
the long run would leave several men infected.
"When I come to the point of giving birth, the ARVs
have increased the risky sexual behaviour of people both
male and female because females continue conceiving and
males continue making females pregnant because they know
ARVs are available even if they get infected with HIV." ( FGD, Females in-school, 19-24 years)
It was furthermore noted that the availability of
ARVs could lead to false confidence of protection from
infection as exhibited in the declined use of condoms as
a protection measure.
"Automatically people's sexual behaviour has changed
and people now go for unprotected sex (live) because they
know that there are ARVs that can be used to weaken HIV/AIDS.
Some people have hope now that there is medicine to
use and keep them living hence having unprotected sexual
intercourse." (FGD, Females out-of-school, 15-18 years)
Increased access to ARVs was also perceived to
increase sexual crimes such as rape.
"There will be an increase in crimes related to sex that
will be committed by some people such as rape or defilement
of young children because people will now believe that
there is a drug that cures HIV/AIDS. Such inhuman acts
will increase." (FGD, Males out-of-school, 15-18 years)
FGD participants had a strong belief that
prostitution was on the increase in the urban areas of Kampala.
They also alluded to the possibility of prostitutes using
their savings to buy ARVs.
"It will increase prostitution because people will know that if `I make money through `playing sex, it will help me to
buy the drug and even remain with some money to cater for
me." (FGD, Males in-school, 15-18 years)
Furthermore, study participants expressed concern
over the increasing usage of ARVs, that it would
undermine positive living. There were hence big chances that
people living with HIV/AIDS (PLHA) would continue
infecting unsuspecting people as illustrated below.
"Yeah! Because now people no longer notice. At least
the other time you could see that someone has herpes zoster or
a rash on the skin and you fear engaging with that person
in sex. But now ARVs kill off the virus and someone gets
refreshed
the skin
everything changes to normal.
You won't be able to notice an HIV-positive person. So,
people will just go in for unprotected sex and in the end the
disease will be transmitted."(FGD, Females in-school,
15-19 years)
In addition, participants argued that because ARVs
prolonged people's lives, the duration of infection of
the partners of PLHA engaged in unprotected sexual
intercourse would be long. Previously HIV-positive
people would die in a short period and therefore would
have infected relatively fewer people.
"Access to ARVs has improved people's health status.
HIV-positive persons on medication live a normal and
prolonged life. However, they can go on transmitting the disease
to others. So may be if these ARVs were not accessible
to people, may be someone would notice the sick who
would live for a shorter time. She/he wouldn't be going into
an unprotected sexual affair with him or her."
(FGD, Females in-school, 15-19 years)
HIV/AIDS not perceived as a big threat
Study participants felt that HIV/AIDS was no longer
a big threat owing to the increasing availability of ARVs.
It was noted that the process of administering ART
would enhance positive change because of the provided
counselling as emphasised below by a female adolescent
during an FGD.
"I think ARVs have influenced people's sexual
behaviour, now if a person takes these ARVs, that person will
become more healthy, so he will know that,' let me protect
myself when I am going to have sex so that maybe I do not
infect my partner'." (FGD, Females in-school, 15-18 years)
Results from FGD participants and KIs echoed
views that HIV/AIDS was no longer a big problem. They
also noted the fact that ARVs were making people live
longer and healthier lives. Furthermore, they alluded to
the fact that with ARVs in place, AIDS was a less painful disease since AIDS patients no longer became too
wasted or too sick with opportunistic infections such as
herpes zoster.
"In reality, people no longer fear AIDS, because there
are drugs that fight against HIV/AIDS, it makes people
look good again and people no longer recognize an
HIV/AIDS person unlike in the past when people would suffer
and appear very sick. People no longer see it as a big
threat because at first it was seen as a terrible disease. It could
cut people's nails, remove people's hair but now with use
of ARVs, it is difficult to see such signs."
(FGD, Male youth out-of-school, 15-18 years"
Participants also reported that people had hope that
a complete cure for HIV/AIDS would be discovered sometime.
The only problem with ARVs now, as earlier mentioned,
is that people now have confidence in these drugs even
when it does not cure and hope that later a drug that cures
will eventually be discovered." (FGD, Male married
adults, 25-67 years)
Misconceptions about ARVs
Results from the study showed widespread
misperception, especially amongst the young people, that
ARVs could cure HIV/AIDS. The virulence of HIV was underplayed:
"No, you see people are no longer afraid because as
you catch the disease, you go and get ARVs, you take them
and be somehow okay. Another thing is that some people
believe that ARVs can cure the disease so they are no longer
afraid." (FGD, Male youth in-school, 15-18 years)
Less than half of the groups equated HIV/AIDS to
any other disease that can be treated and can cause death,
just like cough, malaria or accidents.
"Now people take AIDS as a cough, which can be
cured because now they know ARVs are available. Even if one
is infected, he/she can swallow ARVs and live for a
long time." (FGD, Males in-school, 19-24 years)
Fears about ARVs
Focus group discussion participants expressed
fears about adherence to ART regimen, especially with
low levels of formal education among the population.
They noted that it would be difficult for patients on ARVs
to take the drugs as required, which would lead the
ART access program to fail.
"People may not take the drug as important especially
following its prescriptions well. People can be told for
instance to swallow two tablets a day and then the
second swallowed in the evening at 8:00pm. But some people may not follow these instructions accordingly. Like he/she
can swallow today and tomorrow she/he doesn't take and
then swallows it another day. They may not take ARVs
following the given instructions well, a thing which can cause
problems for them." (FGD, Males out-of-school)
Another important issue raised by the out of school
adolescents was the low level of literacy among the
patients. It was argued that because of this, the patients would
not take clinicians' instructions seriously since they
could not conceptualize clinical implications. This could
result into complications including death as noted below:
"Most people are illiterate, and will not follow the
recommended doctor's instructions on how to swallow ARVs.
For instance, a person can be given a drug to be taken for
a period of seven days but because of ignorance that
person may decide to swallow all that medicine at once,
believing that AIDS will get cured immediately, not knowing
that he/she may in fact die." (FGD, Males
out-of-school, 15-18 years)
Also raised were fears concerning the quality of ARVs
on the market. It was noted that some of the ARVs
were either counterfeit or expired.
"In the process of increasing ARVs use and availability
in the country, some people will start manufacturing and
selling fake and duplicated ARVs. This is because they will
be interested to meet the people's increased demand for
the drug." (FGD, Males out-of-school, 15-18 years)
The study also revealed that some community
members held negative views about ARVs, arguing that ARVs
were made to exploit the poor or reduce the African
population. Other participants wondered why drugs that
would cure HIV/AIDS completely could not be made:
"There is also a belief that, manufacturers make ARVs
just to exploit the population. They say they want to
make money out of them. ... if these people are capable of
making ARVs why not make the ones that cure the disease
completely? (FGD, Males in-school, 15-18 years) "Some people think that these ARVs are not good and that it is
one way of eliminating people or reducing on the
population, so the drugs don't prevent the disease but are just
killing people." (FGD, Males in-school, 15-18 years)
Some of the questions raised by out-of-school
adolescents showed a lot of mistrust and inaccurate
information based on rumours. An out-of-school FGD
participant remarked:
"We hear that ARVs brought here are made from
European countries. That when you use that drug you have low
chances of producing and some become completely infertile. They want to make sure that this population is reduced
and people should not be interested in sex."
(FGD, Males out-of school, 15-18 years, Kafeero Zone)
Discussion
Although ARVs do not cure HIV/AIDS, using them
consistently tremendously improves the quality of life
of most HIV-positive patients and helps them to live longer.
This study revealed a big worry in the
urban/peri-urban areas of Kampala city that increased availability and
access to ARVs would increase risky sexual behaviour. Some of the risky sexual behaviours pointed out included
promiscuity, lack of faithfulness, multiple partners,
prostitution, and rape.
These findings show that high risk groups
could relapse in behaviour as they become healthier. This
confirms the evidence from industrialized countries
which showed that the prevention benefits of ART were
beset by complacency about the threat of HIV/AIDS and
resulted in increased risky behaviour and new infections. 5, 6 This implies that the relapse in behaviour would
undermine the current HIV/AIDS prevention
achievements as HIV infection rates increase. Although it is difficult
to distinguish people's personal opinions from their
reports of what others think, it is an indicator of what
behaviours may occur. The national AIDS control programs ought
to step up HIV campaigns targeting this new
phenomenon of prevention among those who are
HIV-positive.16 Past interventions focused on risky behaviours with
emphasis on ABC strategy without the ARV phenomenon.
So the fears and perceptions raised by participants in
this study imply that prevention interventions ought to
factor in the ART with emphasis on prevention among
those who are HIV-positive as well as those persons
whose HIV status is not known.
On the other hand, it should be noted that
positive health behaviour among HIV-positive people
was perceived as a benefit that has `spill-over effect' to
the community. In some cases, HIV-positive people,
owing to intensified counselling and treatment realized that
they had become healthier and productive again to
society. These findings are in line with Bunnell et al (2006a-b)
in rural setting in Uganda.17, 18 This positive attitude
ought to be promoted and maintained.
HIV/AIDS was no longer perceived as a
threat due to increased access to treatment. HIV positive
patients have renewed hope to live and therefore
should cease chance to live more productively and
implement `succession planning' for their families. Some youth
on the other hand have misconceptions that ARVs are a
cure to HIV/AIDS. This is a dangerous misconception
and ought to be seriously targeted since it can promote HIV spread. HIV/AIDS is still a threat despite
improvement in treatment and yet there is no known cure.
Tremendous efforts, however, have been directed to
developing HIV vaccines, and persistent health education for
everyone, regardless of their HIV status is critical. 19
Concern over adherence to ART regimen
was expressed mainly because patients may not be well
educated. Furthermore, literacy on ART is still limited.
In the event that adherence and compliance to
medication is compromised, then the country would have a big
crisis of drug resistance which would compound the
problem. Nonetheless, good adherence can be achieved
in resource-limited settings as observed by Weidle et
al 2007. In their study, they concluded that good
adherence and response to antiretroviral therapy could
be achieved in a home-based AIDS care programme in
a resource-limited rural African
setting.20 It is therefore recommended that health-care systems ought to
continue to implement, evaluate, and modify
interventions to overcome barriers to comprehensive AIDS care
programmes, especially the barriers to adherence to ART.
Urban dwellers also expressed fear about
the steady supply of ARVs. There was worry that if
donor funding is withdrawn, the patients would be at a big
disadvantage since there would be drug supply
disruption. The known existence of fake drugs such as
Paracetamol, Aspirin, etc on the market for other diseases was
viewed as an indicator that the same could occur for ARVs.
Control measures to curb fake drugs should be reinforced.
The National Drug Authority in Uganda, the police
and other law enforcement organs need to be on the alert.
Conclusions
There are still fears and misconceptions about the
effect of enhanced access to ART, fears that it would
increase risky sexual behaviour and increase HIV transmission.
Information Education and Communication on ART availability and use should be enhanced targeting
persons of unknown HIV status, HIV-positives on
ARVs, and those not on ARVs. New prevention
programs modified and specific to the needs of PLHA should
be developed and implemented. They should include
information that emphasizes the fact that
HIV-positive people on ART can still transmit HIV.
Acknowledgements
We would like to thank the Academic Alliance for
AIDS Care & Prevention in Africa for giving us the
opportunity to conduct this study. We also extend out
gratitude to our parent Institutions namely Makerere
University School of Public Health (MUSPH) and the
Department of Sociology, Makerere University for allowing us to participate in this study. We are thankful to Kawempe
Division administration who granted us permission to
conduct the study in the area. Our study coordinator
Dr. Edson Muhwezi and administrator Ms Maxencia Walusimbi were very instrumental in this study. We
also thank our Research Assistants (RAs) who were very
valuable in collecting accurate data. We are grateful to
our study participants who spent valuable time with the
research team and cooperated during discussions and
interviews. We are also grateful to Ms Susan
Newcomer from the National Institute of Health (USA) who
reviewed and made important comments which have
been incorporated in this study. Lastly but not least, our
sincere thanks go to the `Bill and Melinda Gates
Foundation' for providing all the funds for this study
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