Adolescents Living with HIV in
Uganda:
Factors Affecting Disclosure, Adherence, and
Prevention
A Literature Review
Prepared by Michaela Kerrissey
For JCRC & HCP
May 2008
Adolescents Living with HIV in Uganda: A Literature Review
Table of Contents
Acronyms .............................................................................................. 2
Introduction .......................................................................................... 3
Methodology .......................................................................................... 6
Sources .............................................................................................. 6
Limitations ......................................................................................... 6
Adolescents Living with HIV in Uganda .................................................. 8
Disclosure ........................................................................................... 10
Barriers............................................................................................ 10
Facilitators ....................................................................................... 11
Adherence to antiretroviral drugs ........................................................ 12
Barriers............................................................................................ 13
Facilitators ....................................................................................... 14
Prevention for Positives........................................................................ 17
Barriers............................................................................................ 19
Facilitators ....................................................................................... 21
Behavior Change Interventions for Adolescents Living with HIV ........... 23
Conclusions to take from the literature ................................................ 28
Works Cited ........................................................................................ 30
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Adolescents Living with HIV in Uganda: A Literature Review
Acronyms
AIDS
acquired immunodeficiency syndrome
ARH
adolescent reproductive health
ART
antiretroviral therapy
ARV
antiretroviral drugs
GOU
Government of Uganda
HCP
Health Communication Partnership
HIV
human immunodeficiency virus
JCRC
Joint Clinical Research Centre
KI
key informant
MOH
Ministry of Health
NGO
nongovernmental organization
RH
reproductive health
SRH
sexual and reproductive health
STD
sexually transmitted disease
STI
sexually transmitted infection
TASO
The AIDS Support Organization
UDHS
Uganda Demographic and Health Survey
UHSBS
Uganda HIV Sero-Behavioral Survey
WHO
World Health Organization
YLH
youth living with HIV
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Adolescents Living with HIV in Uganda: A Literature Review
1. Introduction
Worldwide, the number of adolescents living with HIV is increasing
rapidly. In fact, half of new HIV infections worldwide are among 15 – 24
year olds (UNAIDS, 2002). Moreover, children who acquired HIV from
their mothers are now living longer, healthier lives as a result of
increased access to antiretroviral therapy. Adolescents living with HIV,
like all adolescents, must deal with their changing bodies and developing
sexuality; they do so, however, in the face of immense stigma and
confusion.
Of particular concern for adolescents living with HIV are
three intertwined challenges: disclosure, adherence to antiretroviral
therapy (ART), and the prevention of HIV transmission to sexual
partners.
In Uganda, addressing the needs of adolescents living with HIV is
imperative.
Uganda has a young population, with one quarter being
made up of adolescents (MOH, 2000).
Adolescent participation in
HIV/AIDS treatment and care programs has been steadily increasing,
due largely to expanded access to antiretroviral therapy.
In these
adolescent programs, the specific needs, barriers, and facilitators to
ensuring health among youth have begun to become apparent. It is also
evident that young people are a crucial resource in preventing the spread
of HIV and ensuring health maintenance among those who are already
living with HIV.
A central question for programs engaging young people living with HIV is
how to positively harness the youth’s participation for individual and
group benefits. Examples from the United States and elsewhere have
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Adolescents Living with HIV in Uganda: A Literature Review
shown that interventions for adolescents living with HIV can effectively
improve health-related quality of life by increasing disclosure, adherence,
and risk reduction for onward HIV transmission.
Initial evidence in
Uganda suggests that these interventions can be successfully adapted to
the local context. However, many programs have focused on strategies
for preventing adolescents from acquiring HIV rather than addressing the
experiences of adolescents living with HIV. As a result, many adolescents
living with HIV lack access to support that is tailored to their unique and
complex needs. At the same time, there are valuable lessons to be
learned from new approaches to HIV-infected adolescents that have been
piloted in Uganda and elsewhere.
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Adolescents Living with HIV in Uganda: A Literature Review
2. Justification for this Review
In
response
to
the
immense
challenges
faced
by
HIV-infected
adolescents, HIV/AIDS programs throughout Uganda are beginning to
develop interventions specifically targeting this group. The Joint Clinical
Research Centre (JCRC) and Health Communication Partnership (HCP)
are in the process of developing a communication campaign to increase
disclosure, adherence, and prevention among HIV positive adolescents.
In order to design an appropriate and effective communication strategy,
HCP supported this review of relevant and recent literature. This review
presents an overview of research and programs aimed at supporting
disclosure, adherence, and prevention among adolescents living with
HIV.
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Adolescents Living with HIV in Uganda: A Literature Review
3. Methodology
Sources
This
paper
reviews
literature
presenting
quantitative
and
qualitative evidence from Uganda and elsewhere when necessary.
Published articles, poster presentations, meeting transcripts, and
literature
from
non-governmental
considered as useful information.
organizations
(NGO’s)
were
all
Published academic articles were
located through the following databases: PubMed, JSTOR, Health Source
(Nursing/Academic), and Academic Search Premier. Online searches
were performed using the following terms: “adolesce* and HIV and
disclosure”, “adolesce* and HIV and adherence”, “adolesce* and HIV and
prevention”, and “adolesc* and HIV and Uganda”.
Key informant (KI)
interviews were conducted with:

Dr. Sabrina Bakeera, Department of Paediatrics, Makarere Medical
School

Dr. Nicollete Nabukeera, Department of Paediatrics, Makarere
Medical School

Frank Wandera, World Vision

Dr. Victor Musiime, Joint Clinical Research Centre (JCRC)

Dr. Rebecca Ntabadde, JCRC
These individuals were identified by Health Communication Partnership
(HCP) as potential key informants.
Limitations
The primary limitation for this literature review was the lack of
published articles discussing adolescents living with HIV in Uganda. It is
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Adolescents Living with HIV in Uganda: A Literature Review
likely that many organizations in Uganda are working formally and
informally with HIV-infected adolescents, and their experiences would be
a rich source of information. However, their experiences are difficult to
collect and summarize, and such an endeavor was outside of this paper’s
scope.
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Adolescents Living with HIV in Uganda: A Literature Review
4. Adolescents Living with HIV in Uganda
In Uganda, the term “adolescence” is limited to ages 10 to 19 while
“youth” defines ages 15 to 24 (MOH, 2000). However, it is important to
note that some programs for adolescents in Uganda begin at age 12 and
others end at 181.
Finding large-scale quantitative data describing the
knowledge, attitudes and practices of this discrete group can be difficult
because many national and international studies describe 0 -14 years as
children and 15- 49 as adults of reproductive age.
The Uganda
Demographic and Health Survey defines young adults as aged 15 – 24
(UDHS, 2006) and the Uganda HIV Sero-behavioral Survey often
discusses 15 – 19 year olds as well (UHSBS, 2005). The Uganda National
Adolescent Health Policy indicates that adolescence is a “period of
physical psychological and social transition form childhood and may fall
within either age range” and so concludes that the terms “adolescence”,
“youth”,
and
“young
people”
may
be
used
interchangeably
for
convenience at most times. This paper follows this approach to
terminology. However, it is important to note also that program
implementers in Uganda have expressed a need to break adolescents into
even more limited categories, as an 11 year old and an 18 year old face
different challenges in the development of their sexuality.2
Adolescents face unique challenges and have special needs that
require attention from health programs. Bakeera – Kitaka describe
adolescence as a time when a young person experiences the following:
1
2
•
sense of immortality
•
risk taking as the norm
From KI interviews with Dr. Musiime, Dr. Ntabadde, Dr. Bakeera and Frank Wandera.
From KI interview with Dr. Musiime.
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Adolescents Living with HIV in Uganda: A Literature Review
•
emerging sense of identity
•
emerging sense of autonomy and independence
•
challenging authority figures
•
experimentation with sex and gradual development of sexual
identity
•
experimentation with substance use
•
peer pressure
•
focus on body image
•
being part of a mobile population
(Bakeera-Kitaka, 2006)
For any person, adolescence is a challenging time; this is even more so
for adolescents living with HIV.
In Uganda, 2.5% of females and 1.5% of males aged 15 – 19 are
infected with HIV (UHSBS, 2005). Moreover, HIV/AIDS organizations
providing treatment and care report steadily growing numbers of
adolescents
as
clients,
especially
perinatally (Birungi et al, 2007).
adolescents
who
acquired
HIV
For instance, The AIDS Support
Organization (TASO) has over 5000 adolescents and The Pediatric
Infectious Disease Clinic (PIDC) at Mulago has over 600 adolescents
living with HIV (Birungi et al, 2007). The Joint Clinical Research Centre,
Mildmay, and other treatment and care providers are also reporting
steady increases in numbers of adolescent clients.
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Adolescents Living with HIV in Uganda: A Literature Review
5. Disclosure
Disclosure refers to the act of informing others about the serostatus of a person with HIV. In Uganda, the overall rate of disclosure is
low, at 8% (UHSBS, 2005). More specifically, 84% of Ugandans age 1549 have never discussed HIV with any of their partners, and almost 90%
do not know the HIV status of any of their sexual partners (UHSBS,
2005). Disclosure rates among adolescents living with HIV are low as
well. For instance, in a TASO Uganda/Population Council study, over
60% of adolescents in relationships had not disclosed their status to
their current partners, and almost 40% of these adolescents were in
relationships with HIV-negative partners (Birungi et al, 2007). In some
cases, non-disclosure regarding adolescents also refers to a care-giver’s
non-disclosure to an HIV-infected youth about his or her own status.
Other times, non-disclosure among adolescents refers to the individual’s
lack of disclosure of his or her own status to others. Disclosure is a
crucial part of adherence and positive prevention (Bakeera – Kitaka,
2006).
Among adolescents who know their status, fears surrounding
disclosure are high, and few adolescents disclose to more than one or
two people.
FGD’s in Uganda found that most adolescents do not
disclose outside of the family, and even within the family disclosure is
limited to one or two trusted members (Musisi, 2007). Friends seem to
not be trusted for disclosure, due to fears of gossip (Musisi, 2007).
Barriers
Stigma:
The most commonly cited reason for nondisclosure among
adolescents is stigma.
In particular, adolescents report fearing the
“pointing of fingers” by other people and involuntary disclosure,
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Adolescents Living with HIV in Uganda: A Literature Review
especially in the school environment (Musisi, 2007).
Stigma in the
school environment is serious, and it is perpetuated by fellow students
and teachers alike.
Fear of reactions from parents: Some adolescents fail to disclose to their
guardians because they fear punishment or loss of love (Bakeera-Kitaka,
2006).
Fear of rejection from partners: This fear is cited in many FGD’s and
interviews with HIV-infected adolescents (Bakeera – Kitaka, 2006).
Lack of confidentiality: Many adolescents fear that if they tell one person
of their status then rumors will spread and the entire social group,
school, or community will know (Bakeera – Kitaka, 2006).
Guilt and fear among parents: At times, parents do not disclose their
children’s status because they feel guilt for infecting them with the virus
or fear for the consequences on the adolescent’s mental and social wellbeing (Bakeera-Kitaka, 2006).
Facilitators
Peer groups: At JCRC, some care takers have found peer groups as a
helpful medium for disclosure to adolescents who do not know their
status. Five out of 130 enrolled adolescents had their status disclosed to
them during meetings (Musiime et al, 2007).
Supported disclosure: Assistance from a trained counselor can ease
disclosure both for parents disclosing to their children and adolescents
disclosing to others (Bakeera – Kitaka, 2006).
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Adolescents Living with HIV in Uganda: A Literature Review
6. Adherence to antiretroviral drugs
Adherence means taking medicine consistently and as prescribed
by a health care provider at least 95% of the time. Non-adherence refers
to the failure to take medication consistently and correctly, and it can
include any of the following: missing one or multiple doses, not observing
the correct time intervals between doses, or not observing dietary
instructions. The consequences of non-adherence to ARV’s are serious:
incomplete viral suppression, continued destruction of the immune
system, disease progression, increased side effects and the development
of resistant strains of HIV. In this sense, non adherence to ARV’s
represents a hazard to the individual health of the person living with HIV
as well as the health of the general public (Friedland, 1997).
Many people, including adults, have difficulty adhering to ARVs.
Some of the general reasons why adults fail to adhere are lack of
transport to reach the facility for re-supply, waiting time at the facility,
lack of food, stigma, lack of social support, difficult drug regimens,
treatment
fatigue,
and
poor
service
delivery
by
health
workers
(Nakiyemba, 2005). These reasons for adults not adhering to their drugs
likely apply to adolescents living with HIV as well.
At the same time, adolescents living with HIV face unique
challenges in adherence. In the US and elsewhere, non-adherence has
been linked to age, with younger people being less likely to adhere to
their drug regimens (Becker et al, 2002). One study at Mulago Hospital
found relatively good adherence rates among children (including
adolescents), with ¾ of the study participants adhering more than 95%
of the time (Nabukeera-Barungi, 2007). However, other cohorts in
Uganda have demonstrated low levels of adherence among adolescents,
as low as 70 -85% (Bakeera-Kitaka, 2006). Common reasons given for
nonadherence include side-effects, inconvenience of taking many pills,
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Adolescents Living with HIV in Uganda: A Literature Review
forgetfulness, and “the feeling that medications continually reinforce the
reality of being HIV-infected” (Bakeera-Kitaka, 2006).
Barriers
Non-disclosure to the adolescent: When adolescents are not aware of their
status, forcing them to take drugs has been found difficult (Bikaako –
Kajura et al, 2006). This may be because the adolescents do not
understand how the drugs benefit their health or feel resentment toward
the caregivers for making them swallow so many pills without explaining
to them.
Non-disclosure to others: Adolescents who have not disclosed their status
are more likely not to adhere to their drugs. A cross-sectional study of
170 children age 2 – 18 receiving ART at Mulago Hospital found that
when the primary caregiver was the only one who knew the child's
serostatus, he/she was three times more likely to be non-adherent
(Nabukeera et al, 2007). FGD’s in another study suggest that school
schedules present a barrier to adherence, and so there is a need for
disclosing to school nurses and/or headmasters at boarding schools
(Musisi, 2007). Non-disclosure to others is a barrier to adherence for a
variety of reasons. One reason is that adolescents who have not disclosed
do not receive support in adhering. For instance, adolescents in boarding
schools may not have people by whom they can be supported and
monitored (Nabukeera et al, 2007). Another reason is that they are afraid
of being seen taking their drugs by others and they do not have a private
place in which to swallow the pills.
Poverty and stigma: Bikaako –Kajura et al note that even when there is
full disclosure, poverty and stigma are barriers to adherence among
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Adolescents Living with HIV in Uganda: A Literature Review
youth living with HIV in Uganda. (Bikaako – Kajura et al, 2006). In
addition, the desire to hide taking drugs from friends, especially at
boarding schools, has proven a challenge to adherence (Musisi, 2007).
Nabukeera et al note that stigma amongst care-givers also negatively
affects adherence (Nabukeera et al, 2007).
High pill burden: In FGD’s, care givers expressed that 5 pills were simply
too many for the children to take (Musisi, 2007).
Substance Abuse: Numerous studies in the US have demonstrated that
adherence to any drug is reduced by substance abuse (Lightfoot et al,
May 2007). Further research is needed on the affect of substance abuse,
particularly alcohol, on adherence among adolescents living with HIV.
Location: An adolescent who lives far from the health service point is
more likely not to return for services, including ART (Bagambe et al,
2008). Bagambe et al found that loss to follow – up among children and
adolescents at Mulago Hospital was high (44%) and was especially
common among those who lived far away and/or were healthier.
The
difficulty of traveling for health services is compounded for adolescents,
who depend on adult guardians’ schedules and financial support. This
suggests a need to work with guardians and adolescents to ensure the
understanding of health care’s importance as well as a need to deliver
health services and support as close to adolescents’ homes as possible.
Facilitators
Peer groups:
Numerous studies have shown peer groups to effectively
increase adherence among adolescents. In the US, one effective model
included adolescent peers and their families within the groups; the
authors suggest that this model is effective in part because of enhanced
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Adolescents Living with HIV in Uganda: A Literature Review
relationships among infected youth and concerned adults along with
enhanced communication between families and service providers (Lyon et
al, 2003).
In Uganda, a recent study at JCRC demonstrated that adolescent peer
support groups improve adherence to ART and reduce self-stigma among
HIV infected youth.
This group, aimed at adolescents living with HIV
aged 10 – 19, meets monthly on Saturdays, and includes health and SRH
education, discussions of peer pressure, growth development and self
esteem, along with games and music. Ongoing one- to-one counseling is
also available.
The study documented improved adherence among
adolescents attending sessions (Musiime et al, 2007).
Disclosure: Primary caregivers who disclose the child’s status to at least
one other person are more likely to foster good adherence (Nabukeera et
al, 2007).
Allowing the adolescent control over adherence: More than one study has
documented a desire among adolescents to take their pills themselves
(Musisi, 2007).
Strong parental and/or care giver relationships: In-depth interviews with
42 HIV-positive children and their caregivers in Uganda found that
strong parental relationships were related to good adherence (Bikaako –
Kajura et al, 2006).
Support from health care providers: Positive relationships with doctors
and counselors seem to be very effective in improving adherence and
general quality of life for adolescents living with HIV; for instance this
support is described as making the adolescents feel “loved and of worth”
(Musisi, 2007).
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Adolescents Living with HIV in Uganda: A Literature Review
Recognizing the benefits: In FGD’s, one participant explained that after
her son saw that he gained weight, his adherence improved (Musisi,
2007).
Motivation to Avoid Further Hospital Admissions: At Mulago hospital,
Nabukeera – Barungi also found that those children who had been
hospitalized twice or more before starting HAART were more likely to
adhere (Nabukeera et al, 2007).
Providing
Youth
Friendly
Services:
A
needs
assessment
among
adolescents in Kampala found that 92% of the adolescents interviewed
desired a separate clinic from the paediatric or adult clinics (Bakeera –
Kitaka, 2006).
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Adolescents Living with HIV in Uganda: A Literature Review
7. Prevention for Positives
With ART, many adolescents living with HIV are feeling healthy
and aspire to have children and explore their sexuality. Recognizing this
fact and supporting HIV-infected adolescents through this process is an
important part of ensuring the rights of PLHA.
As the Guttmacher
Institute explains,
“Regardless of HIV status, the ability to express oneself
sexually and the desire to experience parenthood are, for
many, central to what it means to be human. Therefore,
acknowledging these needs and aspirations is essential to
vindicating the basic human rights of HIV-positive people.
At the same time, because the large majority of HIV
infections
worldwide
occur
as
a
result
of
sexual
intercourse, global HIV prevention efforts must address
the sexual and reproductive health needs of people living
with HIV to succeed (Guttmacher Institute, 2006).”
Additionally, numerous authors have pointed out that it is more effective
to target prevention strategies at a distinct number HIV-infected persons
than an entire population (Stall, 2007). All of this is certainly as true for
adolescents with HIV as it is for adults with HIV, only that approaches to
sexuality need to be geared specifically and appropriately for this
younger audience.
Prevention programs for adolescents have a twofold goal of
reducing HIV transmission to others while also improving well-being
among adolescents living with HIV (Lightfoot, May 2007).
Some
adolescents decrease their sexual risk behaviors upon learning that they
are infected with HIV (Crepaz and Marks, 2002), hence the need for
disclosure. However, studies in the US have also shown that about 50%
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Adolescents Living with HIV in Uganda: A Literature Review
of young people living with HIV engage in HIV risk acts after knowing
their status (Murphy et al, 2001; Sturdevant et al, 2001). This suggests
that interventions to support prevention among HIV-infected adolescents
are necessary.
Indeed, developing sexuality is a reality for most youth, HIV
infected or not. In Uganda, the median age of first sexual intercourse is
17 among women and 18 among men (UHSBS, 2005). This suggests that
many adolescents living with HIV will also become interested and
exposed to sex in this age range. A TASO-Uganda/Population Council
study found that 52% of HIV infected adolescents were dating, 34% were
sexually active, and a majority saw no reason why an HIV-infected
person should not have sex (Birungi et al, 2007). As Birungi and her
colleagues explain, “Many young people living with HIV aspire to be just
like their peers who are HIV negative.
Therefore, it can only be
anticipated that these young people as well desire to explore their
sexuality and appreciate the opportunity to talk and ask questions about
it” (Birungi et al, 2007). Evidence from service providers underscores this
point: By 2006 alone, TASO had recorded 184 pregnancies among their
adolescents, PIDC had 9, and The Mildmay Center 7 (Birungi et al,
2007).
In fact, sexuality seems to be an important part of life for young
people. As Birungi et al explain, for young people in Uganda, “[Sexuality]
seems to be a source of happiness, personal fulfillment and well
being,”(Birungi et al, 2007). For instance, as one youth said in a recent
clinical study, “If you say HIV-infected people should abstain, it’s like
condemning us to die”(as qtd in Birungi et al, 2007).
Sexual and reproductive health needs for adolescents include
knowledge to make informed decisions about sex and the ability to
protect one’s own and one’s partner’s sexual health. It also includes
knowledge and skills to prevent unplanned pregnancies, recognize and
treat STI’s, and also to make informed decisions (eventually) about
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Adolescents Living with HIV in Uganda: A Literature Review
childbearing. Other concerns for HIV positive adolescents in Uganda
include looks, finding a date and not being able to express one’s love fully
(Birungi et al, 2007).It is also worth noting that a study of psychosexual
development among HIV-positive adolescents in Cote d’Ivoire found that
one of the main challenges for HIV positive youth was bodily
development, especially for those who were developing more slowly than
their peers (Dago-Akribi et al, 2004), and this suggests that special
attention to body image and self esteem is well warranted. Finally, guilt
and negative feelings around sexuality also present a challenge to
adolescents who are infected with HIV. A TASO/Population Council
study found that over half of HIV-infected adolescents worried about
having sex because of feelings of guilt for potentially infecting the partner
or pregnancy (Birungi et al, 2007). Programs that support positive body
images, explore sexuality, and investigate SRH and HIV prevention in a
positive light are important services for these adolescents.
Barriers
Focusing on negative implications of sex only: Many providers in Uganda
caring for youth living with HIV focus on the negative implications of HIV
transmission, and this can hinder adolescents’ willingness to engage with
care givers about their experienced sexual development and aspirations
(Birungi et al, 2007).
Lack of willingness to discuss sexuality with adolescents: Various sources
report a general hesitancy to discuss sexuality openly with HIV positive
adolescents, among health care providers, parents and other care givers
alike (Musisi, 2007). As one parent said, “What do I tell her? Not see
someone? I would certainly like to see that somebody appreciates and
accepts her. I want her to be happy. Part of me is worried about her
being rejected and what they do in relationships. So it’s just as well that
we do not discuss it” (as qtd in Birungi et al, 2007). Lack of comfort
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Adolescents Living with HIV in Uganda: A Literature Review
discusses sensitive sexual issues among providers has been a deterrent
to youth accessing services in many settings (Guttmacher, 2006).
As
Birungi et al explain, “Talking about positive living without embracing
issues of sexuality has often left most young clients unprepared for
satisfying sexual lives; and worse, it may encourage non-disclosure of
their HIV status to potential and existing partners”(Birungi et al 2007).
Stigma:
HIV-related stigma, along with its effect on disclosure, is a
serious challenge to the adoption of safer sexual practices among HIVinfected adolescents (Bakeera-Kitaka et al, 2008). Fear of rejection,
stigma, and the lack of behavioral skills to disclose and/or negotiate
safer sex are a challenge for adolescents living with HIV (Bakeera –
Kitaka et al, 2008).
Peer pressure: Bakeera-Kitaka et al describe peer pressure as a barrier to
safer sexual practices for adolescents with HIV (Bakeera-Kitaka et al,
2008).
Desire for children: Numerous studies in a variety of settings have shown
that being infected with HIV does not negate desires for children
(Guttmacher, 2006). This has also been shown in Uganda (Birungi et al,
2007; Bakeera-Kitaka, 2008). A qualitative study consisting of eight
FGD’s in Kabarole district in western Uganda found that fertility is highly
valued, and many girls report that they would want to have children
whether or not they were HIV positive (Chacko et al, 2007). A
TASO/Population Scounci lsruvey with 732 young people with HIV
showed that 90% of boys and 87% of girls expressed a strong desire to
have children in the future (Birungi et al, 2007). With desire for children,
as with sexuality, anticipated negative reactions from care providers may
deter adolescents from seeking information about SRH. In a similar
example, a study among adults in South Africa found that most PLHA
DRAFT _ 20 May 2008
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Adolescents Living with HIV in Uganda: A Literature Review
had not discusses their intentions to have children with their health care
providers for fear of negative reactions (Cooper et al, 2005).
Knowledge gaps: Bakeera-Kitaka et al describe insufficient knowledge
among adolescents with HIV in the following areas: reproductive health,
HIV transmission and contraceptive methods (Bakeera-Kitaka, 2008). In
addition, through a series of FGD’s, Chacko et al found a gap in
knowledge about the use of dual methods to prevent both STI’s,
including HIV, and pregnancy. The authors suggest that this disconnect
is related to a fragmentation in the delivery of health education about STI
prevention and family planning (Chacko et al, 2007).
Substance abuse: In the US, substance use has been linked to increased
risk of HIV transmission through high risk sex among adolescents as
well as depressive symptoms and disorder, which is also linked to
increased sexual risk (Rotheram-Borus et al, 1997). In Uganda, 5.6% of
females and 2.2% of males age 15 – 24 had sex in the past 12 months
when drunk or with a partner who was drunk (UDHS, 2006). While
alcohol use and sex among HIV-infected adolescents in Uganda has not
been greatly explored, it may be an important factor in HIV transmission
and depression, and further study on the topic is well warranted.
Psychological distress: In the US, studies have shown that failure to
engage in safer sexual behavior among HIV-infected adolescents is
closely connected to psychological distress (Murphy et al, 2001).
Facilitators
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Adolescents Living with HIV in Uganda: A Literature Review
Hope for the future: Optimism about the future, along with good
counseling, are important to adolescents living with HIV in Uganda
(Bakeera – Kitaka, 2008).
Desire to avoid negative outcomes: Adolescents living with HIV in Uganda
describe a desire to avoid negative health outcomes such as unplanned
pregnancies (Bakeera – Kitaka, 2008).
Developing feelings of altruism: In the United States, it has been found
that altruism is the primary motivation to reduce transmission risk acts
among youth, but that desire to avoid STI’s or become re-infected with
HIV also motivated youth (Lightfoot et al, May 2007).
Youth-friendly SRH services: Offering SRH services that understand the
SRH needs of adolescents may increase willingness to share experiences
and feelings (Birungi et al, 2007).
For instance, a study in Malawi
suggests that using adolescents’ own terminoloy for discussing SRH can
be effective method for fostering meaningful discussion about sensitive
topics (Undie et al, 2007).
Disclosure: In South Africa, evidence from a cohort of adults living with
HIV shows that disclosure is related to having less unprotected sex
(Kiene et al, 2006).
Peer groups:
In Malawi, research found that adolescents were more
willing to discuss SRH in peer groups than one to one interviews (Undie
et al, 2007). This suggests that, as with adherence, peer groups can be
effective methods for positive prevention.
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Adolescents Living with HIV in Uganda: A Literature Review
8. Behavior Change Interventions for
Adolescents Living with HIV
For more than a decade, preventive interventions targeting people
living with HIV have demonstrated positive lifestyle changes and reduced
unsafe sexual behaviors (Crepaz et al, 2006). Evidence indicates that
these interventions are particularly effective with young people living
with HIV (Johnson et al, 2006). Despite the success of preventive
interventions, programs addressing adolescents living with HIV in
Uganda face a number of challenges. First, the number of adolescents
living with HIV has grown immensely due to the initiation of ART;
second, many of these adolescents have relatively good health and
growing desires for sexual activity. Third, the vast majority of these
adolescents
contracted
HIV
from
their
mothers;
consequently,
interventions targeting sexual behaviors and practices will be distinct
from behavior change interventions targeted at youth who are already
sexually active. Other challenges to programs in Uganda include how to
adapt interventions with demonstrated effectiveness to the local context
and how to ensure that these interventions have long-lasting impact.
Integrated Services
Adolescents seem to function best with, “A one-stop shop’,
multidisciplinary model that integrates primary care with HIV, mental
health, prevention, and case management services” (Bakeera – Kitaka,
2006). Integrating sexual and reproductive health services into HIV care
and treatment can help bridge divisions and ease gaps in service uptake
(Guttmacher Institute, 2006). It is recommended by Joint UN Programme
on HIV/AIDS, the World Health Organizaiton and the Global HIV
DRAFT _ 20 May 2008
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Adolescents Living with HIV in Uganda: A Literature Review
prevention Working Group. In 2003, CDC began an initiative using
multiple mechanisms that underscores the importance of incorporating
prevention interventions into treatment programs with outreach to HIVinfected people not receiving ongoing medical care (CDC, 2003). It has
also been found that young people become motivated to altruistically
reduce transmission to others when they also are able to improve their
physical and mental health; integrating prevention messages into
treatment adherence messages has successfully achieved this in the US
(Lightfoot et al, May 2007).
Multiple Mechanisms for Risk Reduction
In the west, it has been pointed out that multiple mechanisms for
risk reduction are necessary for long-term adoption of safer sexual
behaviors for PLHA.
These may include behavioral interventions,
increased access to ART, rescue from high risk environments, treatment
of substance addictions, and a supportive policy environment (Stall,
2007). In Uganda, research points to the need for skills development
while also addressing HIV-related stigma and socioeconomic needs
(Bakeera- Kitaka et al, 2008).
Successful Intervention Models from Abroad
More than ten years ago, a study by Rotheram-Borus et al
conducted in the United States between 1994 and 1996 assessed the
effectiveness of a preventive intervention with HIV-infected youth called
Teens Linked to Care (TLC). The intervention group participated in small
group meetings that covered three modules. The first, called “Stay
Healthy”, explored future goals, developed knowledge for reducing risky
sexual behaviors and substance abuse, and developed skills to increase
DRAFT _ 20 May 2008
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Adolescents Living with HIV in Uganda: A Literature Review
participation in medical care decisions. The second module, “Act Safe”,
developed skills for refusing unprotected sex and coping with challenges.
The third module, called “Being Together”, focused on improving life
satisfaction and emotional well-being (this later became “Stay Well” and
focused on health care behaviors).
months.
These modules were held over 15
Following the modules, the intervention group reported 82%
fewer unprotected sexual acts, 50% fewer HIV-negative partners, and
31% less substance use than the control group (Rotheram-Borus et al,
2000).
This intervention was then refined and emerged under a new
name: CLEAR, or, Choosing Life: Empowerment, Action, Results.
The
key difference of this new intervention was that, rather than taking the
form of small group sessions, it was held via group telephone
conversations. The content differed in a greater focus on improving
adherence and developing skills for self-regulating one’s sexual and
substance use behavior.
Adapting Behavioral Interventions from Abroad
Evidence suggests that interventions for adolescents living with
HIV can be successfully adapted to the Ugandan context. From 20032004, Lightfoot et al conducted a study with Uganda Youth Development
Link (UYDEL) in Kampala to examine whether a “culturally adapted”
intervention with efficacy proven elsewhere would yield similar successes
in Uganda. This randomized controlled trial used a convenience sample
of 100 people living with HIV between the ages of 14 and 21. The
intervention was structured around an adapted version of the US-based
Rotheram-Borus intervention (discussed above), which included an 18
session behavioral intervention based on cognitive behavior therapy
(covering physical health and nutrition, mental health, and reducing HIV
transmission). 65% of these youth had sexual intercourse in their
lifetime and, at baseline, about 40% were recently sexually active.
At
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Adolescents Living with HIV in Uganda: A Literature Review
follow-up, the same percentage of youth were recently sexually active in
both the intervention and control, but the intervention group displayed a
significant decrease in the overall number of sexual partners and
increase in consistent condom use. It is important to note, however, that
this intervention was based on home-visits by nurses, and it may not
feasible in resource-limited settings. Nonetheless, it provides evidence
that best practices from behavioral interventions in the west can be
successfully adapted to reduce onward HIV transmission risks among
youth.
An Example of an SRH Programme for HIV-infected Adolescents
In an effort to address the sexual and reproductive health needs of
adolescents living with HIV, TASO, Population Council and World
Population Foundation focused on the following areas (from Birungi et al,
2007): increased access to family planning, improved client-provider
communication on sexuality, updating service provider knowledge about
SRH needs, developing counseling curriculum tailored to HIV-infected
adolescents, and developing a life skills curriculum for young people
living with HIV.
Mass Media Preferences
FGD’s by HCP found that most participants preferred radio as a source
of information on adolescents and HIV (Musisi, 2007).
Adolescent Clubs
Adolescent peer groups, or “clubs”, have proven effective in facilitating
disclosure, adherence, and positive prevention among adolescents living
with HIV in Uganda and elsewhere (Lightfoot et al, 2007; Musiime et al,
DRAFT _ 20 May 2008
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Adolescents Living with HIV in Uganda: A Literature Review
2007, Undie, 2007; Lyon, 2007; World Vision, 2007; Musisi, 2007).
These studies have each described a greater willingness among
adolescents to speak openly with and listen to their peers.
This goes
hand in hand with the importance of meaningful involvement of
adolescents in prevention, treatment and care programs at all levels.
These peer groups have at times involved care givers, including
guardians and health service providers, and this has been found helpful
because of the enhanced relationship between peers, their caregivers,
and the medical service providers (Lyon, 2007; Musiime, 2007). There
also seems to be a desire among care givers to share with and provide
support to one another (Musisi, 2007). Successful peer groups for
adolescents living with HIV in Uganda have incorporated elements other
than health education, such as music, and this has helped to increase
interest while also improving self esteem (Musiime, 2007). Other groups
have expressed desire to address socioeconomic concerns, including the
provision of school fees support, as education is one of the primary
stresses for adolescents living with HIV in Uganda (Musisi, 2007). It is
important to note also that while adolescents were interested in sharing
ideas
with
groups,
but
felt
more
comfortable
with
anonymous
testimonies, due to fears of stigma (Musisi, 2007).
DRAFT _ 20 May 2008
27
Adolescents Living with HIV in Uganda: A Literature Review
9.
Conclusions
to
Take
from
the
Literature

Full disclosure to adolescents living with HIV is an essential part of
adherence and positive prevention

Adolescents adhere better when they are given responsibility for
taking their medication (with routine pill counts and checks).

Adherence is easier for adolescents when pill burden is reduced
through combined tablets.

Most adolescents receive treatment, care and support through
pediatric care clinics and are often treated as children. Support,
particularly counseling, for children does not adequately cover the
challenges of disclosure, adherence, and sexuality that are
experienced by adolescents living with HIV.

Young people’s sexual desires need to be taken seriously and
discussed openly and acceptingly; otherwise, adolescents may not
receive necessary information and skills for adopting safer sexual
behaviors.

Counseling and other interventions may be more effective when
they are tailored to address the specific needs of adolescents in the
interim between pediatric and adult care.
DRAFT _ 20 May 2008
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Adolescents Living with HIV in Uganda: A Literature Review

Programs addressing adolescents living with HIV are effective when
they involve adolescents living with HIV in their design and
implementation.
DRAFT _ 20 May 2008
29
Adolescents Living with HIV in Uganda: A Literature Review
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Adolescents Living with HIV in Uganda: A Literature Review
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