Adolescents Living with HIV in Uganda: A Literature Review
Adolescents Living with HIV in Uganda:
Factors Affecting Disclosure, Adherence, and Prevention
A Literature Review
Prepared by Michaela Kerrissey
For JCRC & HCP
May 2008
1
DRAFT _ 20 May 2008
Adolescents Living with HIV in Uganda: A Literature Review
Table of Contents
Acronyms
Introduction
Methodology
Sources
Limitations
Adolescents Living with HIV in Uganda
Disclosure
Barriers
Facilitators
Adherence to antiretroviral drugs
Barriers
Facilitators
Prevention for Positives
Barriers
Facilitators
Behavior Change Interventions for Adolescents Living with HIV
Conclusions to take from the literature
Works Cited
Acronyms
AIDSacquired immunodeficiency syndrome
ARHadolescent reproductive health
ARTantiretroviral therapy
ARVantiretroviral drugs
GOUGovernment of Uganda
HCPHealth Communication Partnership
HIVhuman immunodeficiency virus
JCRCJoint Clinical Research Centre
KIkey informant
MOHMinistry of Health
NGOnongovernmental organization
RHreproductive health
SRHsexual and reproductive health
STDsexually transmitted disease
STI sexually transmitted infection
TASOThe AIDS Support Organization
UDHSUganda Demographic and Health Survey
UHSBSUganda HIV Sero-Behavioral Survey
WHOWorld Health Organization
YLHyouth living with HIV
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 livesas 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 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.
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.
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 organizations (NGO’s) were all considered as useful information. 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, MakarereMedicalSchool
- Dr. Nicollete Nabukeera, Department of Paediatrics, MakarereMedicalSchool
- 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 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.
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 programsfor adolescents in Ugandabegin at age 12 and others end at 18[1]. 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 Ugandahave 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:
•sense of immortality
•risk taking as the norm
•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 adolescents who acquired HIV perinatally (Birungi et al, 2007). 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.
5. Disclosure
Disclosure refers to the act of informing others about the sero-status of a person with HIV. In Uganda, the overall rate of disclosure is low, at 8% (UHSBS, 2005). More specifically, 84% of Ugandans age 15- 49 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 Ugandafound 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, 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 well-being (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).
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 tothe 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 MulagoHospital 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, 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 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 MulagoHospital 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 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).
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 AvoidFurtherHospital 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).