As the number of adolescents living with HIV (ALHIV) continues to grow, the need to improve services, policies, and programs intensifies. This technical brief provides guidance for program managers and policymakers in order to develop services for ALHIV and their families/caregivers as they transition toward HIV self-management and adult clinical care. Highlighting key principles and recommendations, this brief offers guidance to countries and programs on how to provide the multidisciplinary care, support, and treatment services these adolescents need.

1. TRANSITIONING OF CARE AND
OTHER SERVICES FOR
ADOLESCENTS LIVING WITH HIV
IN SUB-SAHARAN AFRICA
TECHNICAL BRIEF
JUNE 2012
This publication was produced for review by the United States Agency for International Development. It was
prepared by the AIDSTAR-One project.

2. AIDS Support and Technical Assistance Resources Project
AIDS Support and Technical Assistance Resources, Sector I, Task Order 1 (AIDSTAR-One) is funded by the U.S.
Agency for International Development under contract no. GHH-I-00–07–00059–00, funded January 31, 2008.
AIDSTAR-One is implemented by John Snow, Inc., in collaboration with Broad Reach Healthcare, Encompass,
LLC, International Center for Research on Women, MAP International, Mothers 2 Mothers, Social and Scientific
Systems, Inc., University of Alabama at Birmingham, the White Ribbon Alliance for Safe Motherhood, and World
Education. The project provides technical assistance services to the Office of HIV/AIDS and USG country teams
in knowledge management, technical leadership, program sustainability, strategic planning, and program implemen-
tation support.
Acknowledgments:
Thanks to the members of the Technical Advisory Group, which included Matthew Barnhart, Janet Kayita, Susan
Kasedde, Harry Moultrie, Refilwe Sello, Takira Stokes, and Vicki Tepper. Additional thanks for the feedback from Ian
Hodgson, Rick Olson, Ed Pettitt, Mychelle Farmer, and Rena Greifinger. And finally, a special thanks to the United
States Government colleagues who provided technical input, technical guidance, vision, and professional insight
that led to this work, with particular leadership from Sara Bowsky, in addition to Jennifer Albertini, Anouk Amzel,
Elizabeth Berard, Ryan Phelps, and Linda Sussman.
Recommended Citation:
Sharer, Melissa, and Andrew Fullem. 2012. Transitioning of Care and Other Services for Adolescents Living with HIV in Sub-
Saharan Africa. Arlington, VA: USAID’s AIDS Support and Technical Assistance Resources, AIDSTAR-One, Task Order 1.
The author’s views expressed in this publication do not necessarily reflect the views of the United States Agency for
International Development or the United States Government.
AIDSTAR-One
John Snow, Inc.
1616 Fort Myer Drive, 16th Floor
Arlington, VA 22209 USA
Phone: 703-528-7474
Fax: 703-528-7480
E-mail: info@aidstar-one.com
Internet: aidstar-one.com

3. INTRODUCTION Evidence shows that poorly planned transitions can
result in harmful consequences such as treatment
S ub-Saharan Africa has the highest HIV burden in the
world, with 67 percent of the estimated 34 million
people living with HIV. Globally, children under 15 years
nonadherence and loss to follow-up in care and sup-
port services, both severely impacting the health
of the adolescent and having social and educational
are particularly hard hit: 3.4 million are living with HIV, repercussions (Ferrand et al. 2010; Gilliam et al. 2010;
90 percent of whom live in sub-Saharan Africa (WHO Machado, Succi, and Turato 2010). With the limited
2011a). number of health providers throughout sub-Saharan
Africa, it is likely that many adolescents will not physi-
Approximately one-third of infants born to mothers cally transition to a new provider or to a new clinic.
living with HIV are not on antiretroviral therapy (ART), However, all adolescents are going through a mental
either for their own clinical care or for the prevention transition to adulthood. Although children perinatally
of mother-to-child transmission, and will be infected infected may have very different clinical care needs,
during pregnancy, birth, or breastfeeding. Until recently, those adolescents infected via behavioral routes need
it was assumed few children infected during this peri- similar support services. This technical brief therefore
od would live beyond their fifth birthday. Recent data provides guidance for all adolescents living with HIV,
has emerged to challenge this assumption because and can be adapted for a variety of health care set-
children infected via vertical routes are now entering tings.
adolescence in sub-Saharan Africa. Recent projections
suggest that 36 percent are slow progressors and
have a median survival age of 16 even without access POPULATION OF CONCERN
to treatment (Ferrand et al. 2009a). Moreover, many
children who acquire HIV during the perinatal period As vertically infected adolescents (aged 10 to 19
and are subsequently on ART are now expected to years) emerge as a unique and unplanned for popu-
live a long healthy life. However, they live with a host lation, people living with HIV, policymakers, program-
of clinical and psychosocial care needs that most com- mers, and service providers must focus attention and
munity support and health systems in sub-Saharan develop a stronger understanding of their unique
Africa are not equipped to address (Ferrand et al. health and social support needs, which many times
2010; Li et al. 2010; Petersen et al. 2010; Valenzuela mirror the needs of adolescents infected via behav-
et al. 2009). With recent evidence showing that ART ioral routes. Table 1 shows vertically infected ado-
can prevent sexual HIV transmission among serodis- lescents are more likely to be in advanced stages of
cordant couples (Cohen et al. 2011), decisions about HIV, with a history of opportunistic infections, more
when to start treatment, adherence, and retention complicated comorbidities, different mental health
become even more critical to address among adoles- support needs, and more resistant mutations that
cents living with HIV. Transition can be both a mental require complex treatment regimens than adoles-
and physical reality for all adolescents living with HIV, cents infected via behavioral routes (Gipson and
and services should promote self-care that includes Garcia 2009; Prendergast et al. 2007; Ross et al. 2010;
adherence to ART and the adoption of appropriate Vijayan et al. 2009). Because many vertically and
individualized prevention strategies to help reduce behaviorally infected adolescents do not know their
further HIV transmission (The Lancet 2011a). HIV status, a key service gap is the lack of appropri-
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
1
LIVING WITH HIV IN SUB-SAHARAN AFRICA

4. ate counseling and testing services available for this brief provides guidance for program managers and
population in both rural and urban settings (Coova- policymakers in order to develop services for AL-
dia and Mantell 2010; Ferrand et al. 2010). This can HIV and their families/caregivers as they transition
pose significant barriers to a successful transition toward HIV self-management and adult clinical care.
into adult or adolescent-friendly HIV care. Focusing more specifically on the transitional needs
of adolescents vertically infected with HIV, the con-
Adolescents infected perinatally and behaviorally tents have relevance for those adolescents infected
have different clinical needs, as exhibited in Table via behavioral routes, as highlighted by Table 2. Pro-
1; however, all adolescents need certain care and viding a framework for transition, this brief outlines
support services, as exhibited in Table 2. For those essential care, support, and treatment services to
perinatally infected, important care and support dif- best meet the multiple unique needs of ALHIV. This
ferences include specific psychosocial, disclosure, and technical brief also offers promising approaches and
stigma issues that are related to the fact that they outlines a model of adolescent transition of HIV care
acquired their infection from a parent. and other services. Highlighting key principles and
recommendations, this brief offers guidance to coun-
As the number of adolescents living with HIV (AL- tries and programs on how to provide the multidis-
HIV) continues to grow, the need to improve ser- ciplinary care, support, and treatment services these
vices, policies, and programs intensifies. This technical adolescents need and deserve.
TABLE 1. DIFFERENCES BETWEEN ADOLESCENTS BY TRANSMISSION ROUTES
Perinatally infected Behaviorally infected
More likely to be in advanced stages of HIV Earlier stages of HIV
More likely to have opportunistic infections Fewer opportunistic infections
More likely to not be on first-line drugs and in need of Less likely to need ART and resistance to ART less likely
complex ART regimens
More obstacles to achieving self-management and au- Less likely to experience obstacles to achieving self-manage-
tonomy ment and autonomy
More physical and developmental delays Less likely to have physical and developmental delays
Higher risks of complications during pregnancy Lower number of complications during pregnancy
Higher mortality rates Long-term chronic disease outlook
May not know HIV status although may have been in May experience more adherence challenges
treatment
More likely to have experienced multiples losses related More likely to have denial and fear of HIV
to HIV (parents, siblings, etc.)
More secrecy regarding disclosure More likely to be misinformed about HIV
Struggling with issues related to engaging in intimacy, May distrust clinical facilities
sexuality, and sexual identity
May have heightened concerns about pregnancy and Lack of belief in clinical treatment to prevent vertical HIV
starting families transmission
More likely to have support from family/caregiver and More likely to lack familial, clinical, and social supports
health provider
Source: Gibson and Garcia 2009; HIV Transitional Care Working Group 2011.
2 A I D S TA R - O N E T E C H N I C A L B R I E F

5. TABLE 2. NEEDS OF ADOLESCENTS
Care and support needs Perinatally Behaviorally HIV-negative
infected infected adolescents
Access to HIV testing and counseling All All All
Access to sexual and reproductive health
All All All
services
Disclosure (self & others) All All None
Psychosocial support All All All
Stigma (self & others) All All Some
HIV prevention All All All
Access to HIV care All Some Some
Access to prevention of mother-to-child
All All All
transmission services
Access to ART All Some None
Adherence All Some None
Transition of HIV care All All None
Source: Olson and Kasedde 2012.
DEFINITION OF TRANSITION to the adult focused health care” (Reiss and Gibson
2002, 1309). Usually starting with a partial disclosure
Transitioning HIV care and other services (hereinaf- to the child, the physical act of transitioning to adult
ter referred to as “transition”) is only one of many HIV care is a long-term process, and is not bound
transitions adolescents face. Adolescence is a de- to a particular age. The transition must be based on
velopmental phase between childhood (under 10 developmental readiness, maturity, and responsibility
years) and adulthood (over 19 years) characterized (Ferrand et al. 2010; Gilliam et al. 2010). Transition
by physical, psychological, and social changes at the can correspond with a time when self-exploration
individual level (WHO 2010). Within this timeframe, and risk-taking behaviors are common. Therefore,
there is a wide range of developmental stages, with services must address complex issues such as sexual
many programs separating the two groups into early debut, adolescent pregnancy, short-term consecu-
adolescence (10 to 14 years) and late adolescence tive partners, and experimentation with alcohol and
(15 to 19 years). Although 18 is the legal age of drugs (Machado, Succi, and Turato 2010; Ross et al.
adulthood in many countries in sub-Saharan Africa, 2010; WHO 2010). With foresight and proper plan-
adult behaviors are not necessarily fully adopted by ning, transitional services can maximize resiliency,
then. Therefore, many countries continue to provide minimize risk factors, and promote personal growth.
“youth” health and social support programs for peo- Transition is hopeful; it is an opportunity to increase
ple well into their 20s. adolescents’ autonomy and their connectivity within
the community (Gilliam et al. 2010; Gipson and Gar-
Transition for adolescents with special health needs, cia 2009).
such as HIV, has been described as “a multifaceted,
active process that attends to the medical, psy- For many ALHIV, transition begins with learning they
chological, and educational or vocational needs of are positive, either through disclosure or testing. In
adolescents as they move from the child focused many situations, adolescents have been in clinical
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
3
LIVING WITH HIV IN SUB-SAHARAN AFRICA

6. care, taking ART without explicitly knowing their sta- of HIV over time. Programs that operate from a
tus. For others, an HIV diagnosis often occurs only strengths perspective can build individual and fam-
after several years of poor health, typified by chronic ily capacities, competencies, possibilities, visions, and
health complications and no or limited use of health hopes (Saleebey 1996). This perspective acknowl-
services (Andrews, Skinner, and Zuma 2006; Fer- edges and strengthens individual and familial pro-
rand et al. 2009a; Prendergast et al. 2007). Transition tective traits and does not ignore or downplay real
programs must be tailored to a patient’s individual problems. Providing an opportunity for ALHIV to
capacities, readiness, and developmental age. A “one- build upon their talents operating from a strengths
size-fits-all” approach will not work. For ALHIV who perspective allows the adolescent to learn from mis-
have known their status since they were infants or steps and to minimize harmful behaviors. Regardless
young children, their pediatric health care provider of how the adolescent learns of his or her HIV status,
and caregiver should be active participants in the initial transition efforts need to address the challeng-
transition process. In many settings, the pediatric and es of this period, building on individual, family, and
adult care provider are the same person, so having a community strengths. It is from this initial point that
strong understanding of the unique needs of adoles- transition policies and programs must understand
cents is important for providing appropriate care. and respond to adolescent’s special needs while also
building resiliency factors and coping mechanisms.
To be successful, the transition process must be
smooth and planned in advance. Services that re- UNIQUE NEEDS OF ADOLESCENTS
main uninterrupted produce more optimal health LIVING WITH HIV
outcomes. Planning for transition, and transition itself,
requires flexibility and high levels of interaction and The journey into adulthood, whether it involves liv-
communication among adolescents, service providers, ing with HIV or not, is a period where an individual
and their family members/caregivers. Special con- undergoes major social, physical, and psychological
sideration should be made for ALHIV in rural areas, changes. This transition can be more difficult for AL-
who are more isolated and have intermittent servic- HIV that face additional challenges due to the loss of
es (Ferrand et al. 2010; Hodgson et al. 2011), creat- parents and other relatives (Andrews, Skinner, and
ing even more barriers for the transition process. Zuma 2006; Cluver, Gardner, and Operario 2007;
Petersen et al. 2010), a delayed onset of puber ty (Li
et al. 2010), and difficulty coping with adherence, dis-
TRANSITION: IDENTIFY closure, stigma, and sexual relationships (Menon et
ADOLESCENT NEEDS al. 2007; Miles, Edwards, and Clapson 2004; Ross et al.
2010; While et al. 2004; WHO 2009). It is impor tant
Transitioning adolescents into adult HIV care is not a that transition programs and policies recognize and
simple process; both individuals and systems need to adapt to these needs, while also taking into consider-
be adaptable. Time- and labor-intensive, the physical ation the developmental process of adolescence.
act of transition is only one of many transitions an
adolescent undergoes. With clear planning and fore- Stigma is one of the most difficult issues to address
thought, the process can create a sense of partner- with an HIV diagnosis, regardless of how old people
ship between the adolescent, family members, and are when they find out about their status. With re-
health providers, and lead to stronger management gard to ALHIV, stigma overlays the entire transition
4 A I D S TA R - O N E T E C H N I C A L B R I E F

7. process. Even with treatment advances and increased their sense of competence throughout the transition
public awareness of HIV, stigma has been shown to process (Naar-King et al. 2009a; Petersen et al. 2010;
greatly impact adherence, disclosure, and function- Valenzuela et al. 2009; While et al. 2004; Wiener et al.
ing of providers and ALHIV (Brown, Lourie, and Pao 2009).
2000; Earls, Raviola, and Carlson 2008; Fielden et al.
2006; Strydom and Raath 2005). Stigma impacts the The familial context must also be considered and ad-
decision to disclose HIV status, and is a key reason dressed when decisions related to self-care and clini-
why many ALHIV experience delays in the full dis- cal management are made, given the impor tant role
closure of their diagnosis from their family/caregiver family plays in providing social support to people
or health care provider (WHO 2011b). Contending living with HIV (Brown, BeLue, and Airhihenbuwa
with stigma and the psychological, physical, and social 2010). Many families have been severely challenged
changes associated with puberty and adolescence by HIV, and many ALHIV are cared for by grandpar-
make stigma par ticularly important to address during ents, elderly caregivers, or other family members.
the process of transition (Howell and Hamblin 2011). These burdens often deplete household income
The cultural context, beliefs, and barriers related available to support adolescents as they transition
to stigma and living with HIV are widely different (Nachega et al. 2010). A recent study among ALHIV
throughout sub-Saharan Africa, and they must be in Zambia shows that many do not have strong fam-
identified and addressed to improve services when ily support, especially if orphaned and living with
working with ALHIV (Brown, Lourie, and Pao 2000; extended family, a key consideration when promot-
Doku 2010; Prendergast et al. 2007; Punpanich et al. ing self-care. Many caregivers are overstretched, un-
2008; Vaz et al. 2010; Wouters, Meulemans, and van engaged, and not empathetic to adolescents’ special
Rensburg 2009). needs. This environment may increase the vulnerabil-
ity of ALHIV and may reinforce the need to focus on
INDIVIDUAL AND ENVIRONMENTAL NEEDS strengthening health systems to be able to respond
to the reality facing so many adolescents (Hodgson
Psychosocial Adjustment et al. 2011). Many ALHIV rely on caregivers, who
may be sick themselves, to administer and remind
Psychosocial adjustment, defined as an individual’s them to take antiretrovirals, a situation that may con-
response to a significant life change, is a normal part tribute to nonadherence and that needs to be ad-
of adolescence. As children grow older, they enter a dressed during transition (Prendergast et al. 2007).
process of identity development that includes sepa-
ration and individuation from parents or caregivers. In the Democratic Republic of Congo, youth (both
The psychosocial adjustment of children entering HIV-positive and HIV-negative) who lost their moth-
adolescence is strongly related to parental and fam- ers to complications associated with HIV were more
ily factors, and the large numbers of children living likely to miss health appointments and had less adult
with HIV in Africa that are also orphans can find this supervision compared to youth who did not lose
adjustment enormously difficult (Brown, Lourie, and their mothers to HIV (Andrews, Skinner, and Zuma
Pao 2000; Petersen et al. 2010). Programs need to 2006). This has serious implications for ALHIV, and it
address psychosocial development and work with reinforces the need to include family and caregivers
ALHIV to understand their family environment, to in the transition process to strengthen and suppor t
facilitate self-management of HIV, and to strengthen the self-care skills being developed by the adolescent.
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
5
LIVING WITH HIV IN SUB-SAHARAN AFRICA

8. Both South Africa and Botswana have had some suc- Ross et al. 2010). ALHIV face higher rates of atten-
cess in using a family model to deliver HIV care, and tion deficit hyperactivity disorder, anxiety disorders,
this can provide a supportive context to promote and depression compared to adolescents who do
young people’s self-management within the context not have HIV (Battles and Wiener 2002; Fielden et
of their family. Evidence shows ALHIV have stronger al. 2006; Lee et al. 2006; Petersen et al. 2010; Ross
health outcomes when they have higher levels of pa- et al. 2010; Scharko 2006). Mental health issues can
rental/caregiver involvement (Naar-King et al. 2009a; result in a lower quality of life, faster progression of
Petersen et al. 2010; Scal and Ireland 2005), and that HIV, and poor adherence to treatment (Crepaz et al.
strong psychosocial support provided to familial and 2008; Petersen et al. 2010; Rao et al. 2007).
nonfamilial contacts are associated with higher levels
of psychological coping mechanisms and adherence Transition programs and policies should include a
among ALHIV (Battles and Wiener 2002; King et al. strong focus on mental health and should provide
2009; Petersen et al. 2010; Williams et al. 2006). Ad- or refer for effective mental health and psychosocial
ditionally, the benefits of psychological interventions, support to improve the quality of life and well-being
peer support approaches, and social and economic of ALHIV. Key models to explore include a focus on
support for ALHIV can lead to stronger levels of peer support and using lay counselors to strengthen
adjustment (Bachanas et al. 2001; Battles and Wie- the level of care for the adolescent (Petersen et al.
ner 2002; King et al. 2009; Petersen et al. 2010). It is 2010; Vaz et al. 2010).
critical that providers understand the family struc-
ture and ensure that existing protective factors are Sexual and Reproductive Health
reinforced through transition. Although this requires
more resources, the benefits greatly outweigh the Sub-Saharan Africa has the highest rates of teenage
costs. pregnancy in the world, with many adolescent girls
married by the age of 15 (Clark 2004; Laksi and
Psychosocial Well-being and Mental Health Wong 2010). Often, female ALHIV are diagnosed
upon entering antenatal care. Among boys, there is
Adolescents living with HIV have a higher need for a wide range in sexual debut and little interaction
psychosocial support and are at higher risk for men- between them and health and social services. Ser-
tal health challenges compared to those uninfected vice providers at all levels who help ALHIV navigate
due to both psychological reasons and the effects of transitions must be equipped to deal with clinical
HIV infection on neurological functioning (Bachanas and psychological issues of sexuality and reproduc-
et al. 2001; Brown, Lourie, and Pao 2000; Earls, Ravi- tive health (Clark 2004; DeLaMora, Aledort, and
ola, and Carlson 2008; Fielden et al. 2006; Ross et Stavola 2006; Ferrand et al. 2010). When children
al. 2010; Steele, Nelson, and Cole 2007; Van Rie et living with HIV reach adolescence, they are likely to
al. 2007). Many times, psychiatric illnesses emerge examine their sexuality in the context of their HIV
for the first time during adolescence, and providers status. Many adolescents will begin to experience
should be aware of how common the comorbidity sexual desire and are likely to engage in intimate
of clinical depression and HIV is among adolescents relationships, including same-sex relations. Real fears
who were infected perinatally (Battles and Wiener exist regarding disclosure, rejection, and the potential
2002; DeLaMora, Aledort, and Stavola 2006; Fielden for HIV transmission to their partners. The evidence
et al. 2006; Patel et al. 2007; Petersen et al. 2010; suggests that families, caregivers, and service provid-
6 A I D S TA R - O N E T E C H N I C A L B R I E F

9. ers should work with adolescents and provide clear and Kachieng’a 2006). Programs that focus on transi-
facts on positive health and prevention, working to tion must address substance use, including alcohol
strengthen their self-esteem, sense of dignity, and and other illicit substances. There is promising evi-
self-efficacy to approach life, examine high-risk situ- dence that brief interventions, such as motivational
ations, and pursue their sexuality in a positive way interviewing, can be routinely included in ALHIV ser-
(Brown, Lourie, and Pao 2000; Fielden et al. 2006; vices to address both adherence (as discussed later)
Wiener et al. 2009). and substance abuse.
Throughout the transition, providers must include Beneficial Disclosure
access to confidential sexual and reproductive health
services, which includes adherence to medications HIV disclosure is a continuous process of informing
to ensure low viral loads and high condom use an adolescent and others of his or her illness, which
(Prendergast et al. 2007). Referrals for family plan- takes the developmental age and readiness of the
ning should be part of the transition, and ALHIV child into account (WHO 2011b). The process of
who desire to have children in the future, or who HIV disclosure is multidimensional and complex, and
are pregnant, should be referred for safe pregnancy interacts with the process of psychosocial adjust-
counseling to protect themselves and to reduce ment that occurs throughout the period of adoles-
transmission to their partners and children. cence (Steele, Nelson, and Cole 2007). For ALHIV,
disclosure can be thought of in several ways: 1) by a
Evidence recently emerged showing ART can pre- parent about his or her own HIV status; 2) by a par-
vent HIV transmission among discordant couples ent or caregiver about the adolescent’s HIV status; 3)
(Cohen et al. 2011). These findings increase the by a parent or caregiver about the adolescent’s HIV
importance of adherence to ART and the need to status to other family members, school teachers, or
provide continuous support to people living with community members; 4) by an adolescent to friends;
HIV, including ALHIV, to achieve maximum viral sup- 5) by an adolescent to family members, school
pression. Sexual and reproductive health counseling teachers, or community members; and 6) by an ado-
targeting ALHIV must address ART adherence in lescent to potential sexual partners.
order to contribute to reducing the likelihood of HIV
transmission during sex (The Lancet 2011a). It should In particular, the disclosure of an adolescent’s
be noted that these research findings apply to adults HIV status to other family members, community
living with HIV; therefore, more research is needed to members, and school teachers must be approached
investigate whether benefits of ART as a prevention with care. The primary question should be what
mode applies to this important population as well. would be the benefit of disclosure to the ALHIV and
do these benefits outweigh any potential risks? There
Alcohol and Substance Use is limited data supporting the benefits of disclosure
to these groups, though there may be personal
There is little data on rates of substance and drug individual reasons to consider (WHO 2011b).
use among adolescents in sub-Saharan Africa. How- Disclosure is not a linear process; it never finishes,
ever, studies among adolescents in South Africa show and it often requires simultaneous or overlapping
a strong link between substance use and a higher disclosure by the adolescent to different audiences
incidence of risky sexual behaviors (Morojele, Brook, over one’s lifetime.
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
7
LIVING WITH HIV IN SUB-SAHARAN AFRICA

10. The secrecy and cultural taboos around HIV in many ing one’s status has been shown to have numerous
African countries means the decision of parents or benefits including higher adherence rates, increased
caregivers to tell their children is accompanied by levels of social support, higher self-efficacy, improved
fears related to stigma and is seldom done before psychological adjustment, and decreased behavioral
identifying a strong supportive network (Daniel et problems among ALHIV living in the United States
al. 2007; Doku 2010; Menon et al. 2007; Petersen et and sub-Saharan Africa (Battles and Wiener 2002;
al. 2010; Vaz et al. 2010). Disclosure is considered a Brown, Lourie, and Pao 2000; Brown, BeLue, and
prerequisite to transition because only when chil- Airhihenbuwa 2010; Menon et al. 2007; Petersen
dren learn their status can they transition to self- et al. 2010; Steele, Nelson, and Cole 2007; Vaz et
management of HIV. Evidence shows children who al. 2010; WHO 2011b, Wouters, Meulemans, and
are aware of their status have better psychosocial van Rensburg 2009). A recent study from Uganda
adjustment than those who do not know their status. showed participation in HIV-positive peer suppor t
However, disclosure remains a controversial issue; groups led to higher self-efficacy, thus reducing feel-
when and how to disclose to children remains a ings of stigma among ALHIV (Peterson et al. 2010).
struggle for most parents/caregivers and providers Disclosing to other positive peers in a group or in a
(Brown, Lourie, and Pao 2000; Menon et al. 2007; one-on-one setting may have different consequences
Petersen et al. 2010; Prendergast et al. 2007; Steele, than disclosure in a mixed support group. Adoles-
Nelson, and Cole 2007; Vaz et al. 2010). cents living with HIV should be made aware of the
composition of such a support group. Care must
For ALHIV who know their status, deciding when, be taken regarding the types of group in which dis-
how, and who to disclose to is a significant part of closure takes place because it can lead to increased
living with HIV, and each individual must weigh the marginalization of the individual and his or her family
benefits and risks associated with each disclosure (Battles and Wiener 2002; Brown, Lourie, and Pao 2000;
event (Table 3 offers a stepwise disclosure model Petersen et al. 2010; Punpanich et al. 2008; Steele, Nelson,
that may be useful in practice). Amid all of these and Cole 2007;Vaz et al. 2010; Wouters, Meulemans, and
complexities, disclosure and, in particular, know- van Rensburg 2009).
TABLE 3. STEPWISE DISCLOSURE TO CHILDREN
Early steps Next steps Final steps
Make sure children know: Make sure children know: Make sure children know:
• To stay healthy they must • Medicines make them healthy • Their bodies become weak because of the virus
take their medicines by increasing the strength in • The proper terms (e.g.,CD4 cells, HIV)
• When to take their their bodies • The truth to minimize misconceptions
medicines • As their bodies get stronger, • How the virus is transmitted; for older teenagers
• How to take their medicines, their health problems decrease talk about safer sex in a clear and direct manner
including rules around when • As long as their bodies are • Taking medicines and going to the clinic are a
and what to eat strong, they can do whatever lifelong commitment.
• The name of their medicines. they want in life.
Remember: Remember: Remember:
Be encouraging and give Stress the future and positive Be open to questions and answer all truthfully.
positive messages. messages.
Source: Paediatric KITSO, Botswana-Baylor Children’s Clinical Center of Excellence, Botswana Ministry of Health, and UNICEF n.d.
8 A I D S TA R - O N E T E C H N I C A L B R I E F

11. Loss, Grief, and Bereavement reaching adolescence (Coovadia and Mantell 2010).
However, at the center of every HIV testing program
Many children living with HIV in sub-Saharan Africa is the need to ensure that confidentiality, consent, and
have lost one or both parents, a caretaker, relative, counseling are provided, and all testing for adolescents
or other sibling to HIV (Cluver, Gardner, and Oper- should include referrals to post-test support services.
ario 2007; Daniel et al. 2007; DeLaMora, Aledort, and
Stavola 2006; Earls, Raviola, and Carlson 2008; Petersen Self-management of Clinical Care
et al. 2010), and this loss and resulting bereavement can
impact their transition from pediatric to adult or ado- Increased, progressive self-management of HIV care,
lescent care (Brown, Lourie, and Pao 2000; Petersen et which includes adherence to treatment and reten-
al. 2010). There is not a significant amount of evidence tion in care and support programs, is required during
on how ALHIV experience grief and how this may im- transition and is the ultimate outcome of transi-
pact transition in the wide and diverse range of African tion (Ferrand et al. 2010). Many ALHIV and their
countries and cultures (Cluver, Gardner, and Operario caregivers hesitate to leave pediatric care for adult
2007; Daniel et al. 2007). The transition process must care because leaving a known setting and trusted
acknowledge and monitor grief to ensure strong psy- providers can produce anxiety (Machado, Succi, and
chosocial support and counseling systems are in place Turato 2010; Reiss, Gibson, and Walker 2005). During
(Cluver, Gardner, and Operario 2007; Earls, Raviola, and transitions, ALHIV have to increasingly become more
Carlson 2008; King et al. 2009; Petersen et al. 2010). responsible for making clinical decisions in a new
environment. If the adolescent is coming from a pe-
CLINICAL NEEDS diatric care program, the transition may also include
the stress associated when leaving a known and safe
HIV Testing relationship for an unknown one. To minimize stress,
the transition should use an age and developmentally
As mentioned previously, many children in sub-Saha- appropriate approach of increased self-management
ran Africa may not know their HIV status when they and patient autonomy. There is a range of difference
reach adolescence (Ferrand et al. 2010; Menon et al. between middle and late adolescence, and the pro-
2007). Some may be in HIV care, including taking ART, cess must be flexible enough to support ALHIV to
but have not been informed about their HIV status adhere to their medication and follow-up schedule,
or they may be slow progressors who receive clini- while also promoting personal growth. Additionally,
cal treatment for infections and illnesses related to some ALHIV may be pregnant or have children and
HIV but have never been tested. Many barriers exist may need to simultaneously learn to manage their
to HIV testing because parental or guardian consent own care as well as care for a child. Table 4 provides
is needed in most countries to test minors (Ferrand information to consider in building the capacity of
et al. 2009a). As a response to this, South Africa re- ALHIV to manage their care. When reviewing this
cently implemented a controversial policy allowing table, it is important to note that many of the ser-
children aged 12 and older to consent to an HIV test vices mentioned may not be available at all levels of
without parental or guardian consent (The Lancet care, if at all, and may require a referral.
2011b). There are also recommendations to introduce
routine HIV screening in infant/child immunization Many times, the actual disclosure of a child’s sta-
clinics to ensure they are placed in HIV care before tus may usher in the process of self-management
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
9
LIVING WITH HIV IN SUB-SAHARAN AFRICA

12. TABLE 4. SELF-MANAGEMENT TIMELINE
Age Somewhere between Somewhere between 13–16 Somewhere between 17–19
8–12 “Working toward “Capacity to Transition”
“Envisioning a Future” Responsibility”
Individual growth and environmental support: Encouraging healthy decisions
Psychosocial • Link to relevant support • Link to relevant support • Link to relevant support
support groups and programs groups and programs groups and programs
• Support mentorship of
younger positive adolescents
Sexual and • Answer any questions • Link to adolescent-friendly • Continue sexuality
reproductive that emerge honestly and reproductive health provider conversations, encourage
health, truthfully and clinics, review sexuality questions about HIV,
positive issues and safe sex practices pregnancy, and sexuality
health, and • Refer for regular sexual health • Refer for regular sexual health
prevention check-ups check-ups
• Discuss HIV prevention • Discuss HIV prevention
methods methods
Substance use • Discuss substance use and • Discuss the links between • Discuss the links between
how it can impact health sexually risky behaviors, sexually risky behaviors and
substance abuse, and poor substance abuse, and poor
health outcomes; assess if using health outcomes; assess if using
substances and what triggers substances and what triggers
use use
Future • Initiate conversation about • Promote peer education • Connect ALHIV to job
planning future goals (work, school, opportunities training, vocational training,
etc.) • Connect ALHIV with and continued education
relevant nongovernmental opportunities
organizations
Clinical support: Providing or facilitating referrals for needed services
Self-care • Support caregivers to • Build a schedule/calendar with • Reinforce responsibility in
disclose to the adolescent the adolescent to strengthen taking medications and keeping
if not already done adherence to treatment and appointments
• Talk to the child to start retention in support programs
mapping out the transition • Discuss and address
timeline after disclosure transportation barriers and
other issues that hinder
adherence to ART and clinical
visits
Clinical • Begin to explain • Talk to the adolescent about • Review clinical history with the
management medications and reinforce diagnosis, medications, and adolescent
adherence messages for adherence • Help identify appropriate adult
those already on ART • Talk to adolescent about providers/clinics
• Talk about adherence how to seek clinical care for • Solicit questions about care,
issues symptoms or emergencies treatment, and potential future
• Link to counseling • Link to counseling (including changes in treatment
(including lay or peer) for lay or peer) for any mental • Link to counseling (including
any mental health issues health issues lay or peer) for any mental
health issues
Note: These are recommended and should be adapted to the level of the health system at which the adolescent routinely receives care. In many cases the same
providers care for both pediatric and adult clients at the same facility. Source: Hodgson et al. 2011; Jacob and Jearld 2007; Reiss, Gibson, and Walker 2005.
10 A I D S TA R - O N E T E C H N I C A L B R I E F

13. (Chenneville, Sibille, and Bendell-Estroff 2010; Ross et al. 2007; Rao et al. 2007). Optimal ART adherence,
et al. 2010). There is little information on the fac- typically measured as 95 percent or greater, is dif-
tors associated with strengthening autonomy and ficult for most people to attain, and recent evidence
responsibility for care among ALHIV in sub-Saharan shows ALHIV have lower rates of adherence to
Africa; however, a range of studies show that issues ART than adults in Southern Africa. This results in
related to self-efficacy, coping, resiliency, locus of con- lower rates of viral suppression and higher rates of
trol, collective/familial support, education level, and viral rebound after initial suppression (Nachega et
the power of disclosure are all key considerations al. 2009). For many ALHIV infected perinatally, the
when crafting policies and programs to successfully many harsh side effects make stopping the medica-
transition ALHIV from pediatric- to adult-centered tions seem a viable option. This may become less of
care (Bachanas et al. 2001; Battles and Wiener 2002; an issue as ART regimens become more manageable
Brown, Lourie, and Pao 2000; Earls, Raviola, and Carl- and have less side effects (Foster et al. 2009; Naar-
son 2008; Kabore et al. 2010; Kmita, Barnanska, and King et al. 2009b; Prendergast et al. 2007; Vijayan et al.
Neimiec 2002; Meijer et al. 2002; Menon et al. 2007; 2009). Additionally, social, economic, structural, and
Petersen et al. 2010; Vijayan et al. 2009; Williams et al. individual barriers to treatment adherence for ALHIV
2006; Wouters, Meulemans, and van Rensburg 2009). are numerous in resource-constrained settings.
Additionally, as children infected perinatally with HIV A recent cohort analysis from Uganda that included
reach adolescence and adulthood, the likelihood that ALHIV demonstrated a decline in adherence rates
they will receive second- and third-line medications over the one-year time period studied. Many of the
grows, reinforcing the importance of adherence to factors impacting adherence are outside of the ado-
reduce resistance and also to keep viral load low lescent’s control, such as stockouts, lack of access to
(Pursuing Later Treatment Options II Team 2011). the clinic, and transportation difficulties (Nachega et al.
This will become a larger issue for this population 2010). In a recent South African study among ALHIV, a
going forward, and it therefore must be addressed multitude of factors were associated with poor adher-
during the transition process. ence, including depression, pill burden, advanced HIV
status, alcohol use, dropping out of school, side effects,
Adherence and the complications associated with a day-to-day
routine (Nachega et al. 2009). Stigma and disclosure
Adherence, defined as compliance with clinical treat- also play a large role in nonadherence among ALHIV.
ment and care regimes, is a difficult goal for many There remains a need to determine the barriers to
ALHIV and is intimately linked to their ability to adherence that pertain to ALHIV, and to perinatally
manage their own diagnosis and care. In sub-Saharan infected ALHIV specifically, and adapt transition pro-
Africa, ART rates remain low. Only 47 percent of grams to minimize them (Nachega et al. 2010). Pro-
those clinically eligible for ART are able to access it; gram planners and policymakers must consider multi-
of those, children comprise only 23 percent (WHO ple variables when promoting adherence and self-care
2011a). Among those on ART, the complexity of via transition (see Table 5).
routinely accessing clinical services and adhering to
daily drug regimens makes nonadherence common Mental health problems, poor psychosocial well-
(DeLaMora, Aledort, and Stavola 2006; Krummen- being, and self-stigma are also associated with lower
acher et al. 2011; Naar-King et al. 2009b; Prendergast adherence rates among ALHIV (Nachega et al. 2009).
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
11
LIVING WITH HIV IN SUB-SAHARAN AFRICA

14. TABLE 5. MULTIPLE VARIABLES TO ADDRESS WHEN TRANSITIONING TO SELF-MANAGEMENT
Individual Environmental Facility/Clinical
• Current age of adolescent • Transport/access to clinic • Pill burdens
• Alcohol use • Poverty • Stockouts of medicines
• Advanced HIV status • Stigma • Side effects
• Day-to-day life complications • Poverty
• Unable to continue school • Stigma
• Depression
• Poverty
• Stigma
Source: Nachenga et al. 2009.
All programs that focus on transitions among perina- this emerging group, and policies remain nascent at
tally infected adolescents must stress the importance best. Communication between all parties remains
of adherence to a daily and complex drug regimen one of the largest barriers and should be prioritized
and routine clinical monitoring. Some evidence exists throughout transition. See Table 6 for an outline of
detailing the clinical benefits of brief interventions to many of the barriers to transition.
improve adherence rates among ALHIV. Providers
who initiated four sessions of motivational interview- PERSONAL/ENVIRONMENTAL BARRIERS
ing using the information, motivation, and behavioral
model strengthened the ability of ALHIV to manage Adolescent Living with HIV
their diagnosis, and improved adherence (Amico
2011; Krummenacher et al. 2011; Naar-King et al. At the beginning of the transition process, adoles-
2009b, Rongkavilit et al. 2010). This approach moves cents may lack some key skills, traits, and knowledge
a client along a continuum from pre-contemplation, necessary to help them navigate their own medica-
to contemplation, to preparation, to action, and to tions, adherence, social suppor t, and relationships.
maintenance in order to minimize risk behaviors as- Because adolescents mature at different rates, the
sociated with low adherence. Among youth, it has transition process should be flexible and individu-
been shown that a focus on motivation and positive alized, with a goal to enroll and maintain them in
intrinsic behaviors (e.g., values and satisfaction) is clinical care and social suppor t programs. Evidence
more effective than on extrinsic factors (e.g., guilt shows that younger adolescents are more likely to
and rewards; DiIorio et al. 2008; Naar-King et al. adhere to their medications, with adherence levels
2009b; Rongkavilit et al. 2010; Suarez and Mullins decreasing over time (Mellins et al. 2003; Naar-
2008). King et al. 2009b; Williams et al. 2006). Lower rates
of adherence in older adolescents is likely to be
caused by being given more responsibility for their
IDENTIFY BARRIERS TO own medication management without having prop-
TRANSITION er transition suppor t (Williams et al., 2006).
Overlapping barriers to transition exist at the pro- Family/Caregiver
vider, client, and family levels and must be addressed
to minimize interruptions in care and treatment. Family strengths should be evaluated before transi-
Many health systems have little to no response to tion begins, and families should be encouraged to
12 A I D S TA R - O N E T E C H N I C A L B R I E F

15. continually redefine family roles, allowing for ALHIV viders should work to understand the adolescent’s
to have more autonomy as they grow and develop. environment to identify and maximize protective
This flexibility will help ensure that strengths and factors that will suppor t transition and to minimize
coping skills are optimized through the process the negative influences that will make transition
while maintaining appropriate and responsive levels more difficult. Using a person-in-environment ap-
of suppor t. Oppor tunities for paid and volunteer proach allows for ALHIV to cultivate a stronger
work can facilitate leadership skills among both ad- ability to solve problems, realize their potential, and
olescents and their caregivers, and high involvement enhance their lives. Examining the surrounding envi-
of both can maximize outreach to hard-to-reach ronment can help reduce social and systematic bar-
clients. riers and remove obstacles to transition.
Environment CLINICAL BARRIERS
The environment surrounding ALHIV may contain Provider
numerous barriers associated with transition, in-
cluding stigma, lack of suppor tive community pro- In many countries, adolescent HIV care is not a
grams and services, and lack of family suppor t. Pro- specialization, and there is no large cadre of health
TABLE 6. BARRIERS TO THE TRANSITION OF HIV CARE AND OTHER SERVICES
Individual Environmental Facility/Clinical
Adolescents living Family/ Community Providers Health services Health
with HIV Caregiver policies
• Not accessing • Not • Unsupportive • Pediatrics difficult to • Not adolescent • Lack of
services promoting social setting let go friendly formal
• Not attending adolescent • Stigma • Weak understanding • Medicalization policies and
services autonomy • Peer pressure of what is needed of clinics definitions
• Not • Not engaged • Unsupportive to transition • Information is • Lack of
understanding in the care of or absent • Adult providers poorly given transition
requirements the adolescent family network do not understand • Risk of loss to definition
• Not applying • Not able to • No universal adolescents’ holistic follow-up • Lack of
information and provide full family needs • Not all family-
support support for counseling and • New provider not adolescents focused
• Not aware of transition testing comfortable with have access counseling
diagnosis • Stretched • Weak adolescents • Abrupt transfer and testing
• Stress of thin by not institutional • Unable to plan with with no prior policies and
diagnosis having enough support adolescents, services, preparation protocols
• Self-stigma resources to • Weak and families for • Adult services
• No support the community transition not adolescent
transportation family support • Lack of friendly
funds • Resists the communication • Differences
• Resists the physical between pediatric between
transition transition and adult providers pediatric/family
• Resists the transition care and adult/
individual care
Note: These are recommended and should be adapted to the level of the health system at which the adolescent routinely receives care. In many cases, the same
providers care for both pediatric and adult clients at the same facility. Source: Hodgson et al. 2011; Machado, Succi, and Turato 2010.
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
13
LIVING WITH HIV IN SUB-SAHARAN AFRICA

16. professionals trained to work on adolescent-specific rals and linkages to identified community suppor t
care issues. Being sensitive and knowledgeable services. South Africa has a National Adolescent
about the special needs of adolescents is impor tant, Friendly Clinic Initiative accreditation program to
as is maintaining a client-centered focus that pro- improve the quality of adolescent health ser vices at
motes the patient–provider relationship. Providers the primary care level and to strengthen the pub-
should treat youth with respect and in a nonjudg- lic sector’s ability to respond to adolescent health
mental manner, with privacy and confidentiality at needs. A recent evaluation of this effor t showed
the forefront of all interactions. Many adolescents that setting standards for adolescent care using
may not know their status, and disclosure is often adolescent-friendly criteria improves the quality of
a first step. Upon learning one’s status, care should services provided to this group (Dickson, Ashton,
begin with prioritizing the client’s well-being. It is and Smith 2007).
impor tant for providers to maintain realistic expec-
tations while promoting self-management. Because Health Policies
HIV is surrounded by stigma and discrimination,
providers must be welcoming and open, and must The lack of a clear adolescent health policy that
also be able to understand and be empathetic to includes ALHIV is the key barrier at the policy level
the complex needs of ALHIV. Providers at all levels across countries. A first step is to acknowledge
of service delivery should talk to their clients about the need for and actually define self-managed care
the transition and should co-create an individual- transition, including necessary and essential ser vices.
ized self-care transition plan. Pediatric providers Additionally, having perinatally infected children
must discuss and promote personal development reach adolescence without knowing that they are
of the adolescent and communicate with adult infected is all too common an occurrence. There-
providers to ensure a smooth transition. Providers fore, HIV testing and disclosure guidance should be
should think of their role as advocates for ALHIV to standardized with family and pediatric counseling,
encourage and promote the journey to self-care. and testing should be promoted and suppor ted
at the policy level. When individuals are diagnosed
Health Systems with HIV, family testing should be encouraged.
As this large population of perinatally infected ado-
lescents moves through the health system, there WHAT DOES TRANSISTION LOOK
is an oppor tunity to strengthen the integration of LIKE?
adolescent health services at all levels, including
policy, services delivery, outreach, and management. Frameworks based on evidence are essential; how-
Systems should develop standards for adolescent ever, the existing evidence for transition is minimal.
care that reflect the opinions and advice of ALHIV This technical brief provides needed information
and their family/caregivers. Adolescents need to be and outlines key guiding principles to follow when
comfor table receiving care at health facilities and in building a strong framework for transition. Transi-
community services, and this is par ticularly true for tion should focus on resiliency: identifying and build-
many who are concerned they will not be welcome ing on the strengths of the individual, the family/
if they become pregnant (Schuster 2010). Health caregiver, and the health care providers throughout
systems should have strong bidirectional refer- the process. Transition should begin at the moment
14 A I D S TA R - O N E T E C H N I C A L B R I E F

17. of diagnosis and should provide hope as providers, be celebrations of life and should be treated as rites of
adolescents, and their caregivers plan their future. passage.
TRANSITION IS A PROCESS MINIMUM PACKAGE OF SERVICES
Transition needs to be purposeful and planned, ac- Developing a minimum package of services must in-
counting for developmental age and client readiness clude a clear plan for a transition to help adolescents
(Fair, Sullivan, and Gatto 2010; Gilliam et al. 2010). progress toward self-management. Table 7 outlines
There is not a “right time” for transition, and it does an adaptation of a transitional plan that was recently
not occur with one meeting. It usually follows ex- developed to guide transitions in the United States.
tensive discussions between ALHIV and their cur- The adaptation could be used in sub-Saharan Africa
rent and future caregiver(s) over a number of years. where the same set of providers may work with all
Flexibility will ensure those involved in the process those living with HIV—adolescents, children, and
can recognize and respond to the unique needs of adults. Bidirectional relationships that encourage
ALHIV. Transition should be suppor ted, thoughtful, communications among clients, families/caregivers,
and guided by a plan that is developed by ALHIV in and their providers are critical throughout transitions
collaboration with families/caregivers and provid- (Maturo et al. 2011), and the model has bidirectional
ers. There is no set time period for transition, but arrows to reinforce the connection between provid-
literature and practice both stress that the transi- ing clinical and psychosocial care.
tion should adopt a resiliency approach that iden-
tifies key risk and protective factors surrounding TABLE 7. ADAPTATION OF THE “MOVIN’ OUT”
the physical, psychological, and social issues facing TRANSITIONING MODEL
ver tically infected ALHIV. This approach is par ticu-
larly relevant in low-resource settings because the
resilience model looks at what exists, examines the
protective factors that help individuals and their
families cope with HIV, and works to minimize risk
factors and situations. This approach moves away
from a deficit perspective and identifies strategies that
work and help adolescents and caregivers/families ne-
gotiate risk (Evans 2005; Fraser and Galinsky 2004).
The transition is a process that includes preparation,
which optimally includes adolescent support. The model
should be flexible and progressive, allowing the adoles-
cent to take on more and more responsibility for his or
her care. Mistakes will be made; however, the process
should focus on building on a series of wins and increas-
ing the resilience of ALHIV to reinforce their growth
(Ferrand et al. 2009b; Machado, Succi, and Turato 2010;
Menon et al. 2007; Petersen et al. 2010). Transitions can Note: The comprehensive transition checklist mentioned in the table is included in
Annex 1. Adapted from Maturo et al. 2011.
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
15
LIVING WITH HIV IN SUB-SAHARAN AFRICA

18. TRANSITION-GUIDING manner (Earls, Raviola, and Carlson 2008; Laursen
PRINCIPLES 2000; Mar tinez et al. 2003; Miles, Edwards, and
Clapson 2004; Petersen et al. 2010; Punpanich et
DEVELOPMENTAL APPROACH AND al. 2008; Rao et al. 2007; Schenk et al. 2010; Vaz et
FOCUS ON TRANSITION READINESS al. 2010; While et al. 2004). The lack of active and
meaningful par ticipation of ALHIV in development,
Transition proceeds at different times for different implementation, monitoring, and evaluation of many
individuals, but the recommendation is to star t the existing programs is a noted weakness.
process early or as soon as the child knows he or
she is HIV-positive. The transition towards self-care The most successful programs cultivate high levels
should include steps toward helping the child un- of par ticipation and include peer suppor t mecha-
derstand the diagnosis and the requirements need- nisms for ALHIV (Earls, Raviola, and Carlson 2008;
ed to stay healthy while also examining and talking Mar tinez et al. 2003; Menon et al. 2007; Petersen et
about his or her hopes and fears for the future. As al. 2010; Punpanich et al. 2008; Rao et al. 2007; Ross
adolescence is a time marked by continuous change, and Cataldo 2010). Table 8 discusses effective ways
the transition to self-care and in some cases to to include ALHIV in the process of transition.
adult services in a different clinical setting, should
begin during a time of stability, and when the ado-
TABLE 8. COMMON AREAS TO INCREASE PARTICI-
lescent is chronologically, developmentally, behav-
PATION OF ALHIV IN THE TRANSITION PROCESS
iorally, clinically, and psychologically ready. Physical
Actions to take Where to
transition should take into consideration the capac- implement
ity of the identified adult clinic to meet the needs • Form an ALHIV transition Any of the actions
of ALHIV. To help ALHIV navigate new health set- advisory board may be implemented
tings, he or she should be suppor ted to talk about • Create a transition mentorship at a variety of care
the process and develop a timeline with his or her program (older adolescents settings. The types
mentor younger) of programs where
provider, family, and peers. Transition should proac- • Engage ALHIV in research, these actions may be
tively assess the client’s progress and develop cop- monitoring, and evaluation relevant include:
ing mechanisms and strategies to address potential • Allow ALHIV to be decision
or real barriers and stressors associated with the makers • HIV clinical services
• Engage ALHIV in communications, • HIV community
process. advocacy, and publicity and family services
• Engage ALHIV as service quality • Policy making
ADOLESCENT CENTERED AND consultants actions/programs
ADOLESCENT LED • Engage ALHIV in administration, • HIV advocacy
management, and program efforts/programs.
planning
Care programs should be designed with high • Support ALHIV peer promotion/ Within a single
levels of involvement and par ticipation from the education and social networks program, activities
patients. Transitional services should be age and • Engage ALHIV in community may be implemented
outreach at multiple service
developmentally appropriate and should promote • Engage ALHIV as trainers delivery sites, using
self-management skills that include aspects of self- • Engage ALHIV as staff or consistent approaches
determination, psychosocial suppor t, and peer sup- volunteers. and messages.
por t to maximize their responsibility in a realistic Source: Family Health International 2005.
16 A I D S TA R - O N E T E C H N I C A L B R I E F

19. MULTIDISCIPLINARY PROGRAMS ing optimal continuum of care for transitioning AL-
HIV (Fair, Sullivan, and Gatto 2010; Miles, Edwards,
HIV services engaging ALHIV should strive to be and Clapson 2004; Petersen et al. 2010; Vaz et al.
multidisciplinary in order to meet their broad and 2010; Wiener et al. 2009). Kovacs, Bellin, and Fauri
complex health and psychosocial needs (Andrews, (2006) define family-centered care as a par tnership
Skinner, and Zuma 2006; Brown, Lourie, and Pao with the patient and his or her family operating on
2000; Earls, Raviola, and Carlson 2008; Ferrand et al. two levels to address the clinical and the psycho-
2009b; Johnson et al. 2003; Lee et al. 2006; Petersen social needs of a client. Family-centered care can
et al. 2010; Punpanich et al. 2008; Ross et al. 2010; identify strengths and respond to the specific con-
Steele, Nelson, and Cole 2007; Wiener et al. 2009). cerns of families. Service providers should employ
Evidence strongly suppor ts a comprehensive, mul- family-centered care that targets the specific needs
tidisciplinary approach that engages families to best of adolescents and their families/caregivers, taking
meet the clinical, psychological, and social needs of their different developmental needs and household
ALHIV. A multidisciplinary approach should strive to situations into account (Johnson et al. 2009; Li et al.
have clinical care as well as case management, social 2010; Miles, Edwards, and Clapson 2004; Petersen
services, and mental health suppor t. Case manage- et al. 2010; Prendergast et al. 2007; Punpanich et al.
ment is not new to HIV care; however, the needs of 2008; Vaz et al, 2010; Wiener et al. 2007, 2009). It is
ver tically infected ALHIV are different than those impor tant that health care services build relation-
who are newly infected, and a case management ships with ALHIV and their primary adult caregivers
approach can provide stronger linkages to the because both are key to ensuring strong continuity
needed health, social, and psychological services at of services. Because HIV affects individuals, families,
the facility and community levels (Bachanas et al. and communities, all levels of care should be ad-
2001; Brown, Lourie, and Pao 2000; Earls, Raviola, dressed during transition (Cook and White 2006).
and Carlson 2008; Naar-King et al. 2009b; Ross et al.
2010; Tolle 2009). Specially trained, supported, and su- HIV service providers and policymakers should pro-
pervised case management services are regularly men- mote models that examine and maximize resiliency
tioned as a way to best meet the complex and multiple within the individual and the family, and recognize
needs of all ALHIV (Brown, Lourie, and Pao 2000; Fair, that there is no single answer that will apply for all
Sullivan, and Gatto 2010; Johnson et al. 2003; Kabore et ALHIV and their families. Also, as ALHIV reach 19
al. 2010; Miles, Edwards, and Clapson 2004). years and older, they should be more able to make
decisions on self-care and be less reliant on fam-
CONTINUITY OF CARE WITHIN THE ily members. Throughout the process, providers
FAMILY/CAREGIVER CONTEXT should work with ALHIV to identify specific risk
and protective factors as they occur and document
The role of family and caregivers is constantly rede- any commonalities to address and minimize the
fined during an adolescent’s transition to self-care. challenges being faced.
Sometimes, over-engaged family members can cre-
ate barriers to achieving self-care, whereas at other HOLISTIC, FLEXIBLE, AND FUTURE FOCUSED
times, caregiver involvement is crucial to a young
person’s success. Programs based on a family-cen- Transition should be holistic because adolescence
tered model of care are most promising in achiev- is itself a life transition. Employing a focus on the
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
17
LIVING WITH HIV IN SUB-SAHARAN AFRICA

20. future, transition should identify oppor tunities, The Botswana Baylor Children’s Clinical
requirements, and expectations of how to live Centre of Excellence (Botswana-Baylor), a par t-
with HIV. Throughout this process, mental health nership between the Government of Botswana
and social suppor t must be provided in tandem and the Baylor International Pediatric AIDS Initia-
with clinical components. Recent evidence from tive, has an adolescent program that addresses the
Zambia shows that the clinical aspects related to unique needs of ALHIV, primarily those who were
adolescent care are more frequently provided and perinatally infected. The clinic opened in 2003 for
stronger than the social aspects, noting the need children living with HIV and their families; at the
to increase linkages with social programs during time, they had a few adolescent clients. Now, these
transition (Hodgson et al. 2011). The diversity of children are reaching adolescence, and ser vices are
the physical, social, and psychological needs of provided for over 600 adolescents. Services include
ALHIV reviewed here point strongly to the need clinical treatment, with specialized care and suppor t
to integrate stronger psychological and social programs to approach puber ty and adolescence
services into existing clinical care and treatment positively. Bimonthly adolescent forums are held
for ALHIV (Earls, Raviola, and Carlson 2008; with social workers and/or psychologists, leading all
Kabore et al. 2010; Menon et al. 2007; Petersen staff through the most challenging adolescent cases,
et al. 2010; Schenk et al. 2010). The provision of with a focus on how best to deal with psychosocial
holistic and multidisciplinary services for ALHIV issues. The multidisciplinary forum includes physi-
remains lacking globally, with minimal effor t made cians, nurses, psychologists, social workers, and
to address these gaps in sub-Saharan Africa (Earls, auxiliary staff. Through the adolescent forum and
Raviola, and Carlson 2008; Ferrand et al. 2010; other innovative interventions, the program strives
Gilliam et al. 2010; Petersen et al. 2010). Long-term to strengthen staff capacity to provide the highest
and systematic changes are needed in sub-Saharan possible standard of care for ALHIV. Additionally,
Africa to address resource gaps and increase Botswana-Baylor par tners with nongovernmental
service coverage for this population. organizations at the local level to decentralize psy-
chosocial care and suppor t interventions for ado-
lescents, via the Botswana Teen Clubs. A peer sup-
TRANSITION PROGRAMMING: por t intervention, the Botswana Teen Club net-
work, has eight sites in Botswana and continues to
WHAT EXISTS grow. This is a program through which over 600 AL-
HIV gather to “build positive relationships, improve
EVIDENCE OF GOOD PRACTICE their self-esteem, and acquire life skills through peer
mentorship, adult role-modeling, and structured
In general, comprehensive services to suppor t activities, ultimately leading to improved clinical and
adolescents as they transition to self-care are not mental health outcomes as well as a healthy transi-
the norm, and adolescents remain poorly served tion into adulthood” (AIDSTAR-One n.d.b).
(Ferrand et al. 2009b). However, there is a growing
body of evidence to guide programs and policy to Level of Evidence: Programmers should consider
best respond to the comprehensive needs of AL- adapting relevant aspects of this model to their
HIV in sub-Saharan Africa, some par ts of which may context, as appropriate. Noting this model is com-
be replicable in different settings. prehensive, replication of the entire program may
18 A I D S TA R - O N E T E C H N I C A L B R I E F

21. not be feasible in most settings. No randomized delivered by lay and peer counselors. No random-
control trial exists specifically looking at the impact ized control trial exists specifically looking at the
of the Botswana Teen Club on perinatally infected impact of the Zvandiri Program on perinatally in-
adolescents. However, exper t opinion (Baylor Inter- fected adolescents. However, Zvandiri is regarded
national Pediatric AIDS Initiative 2010) and teen- as a best practice based on the Southern African
aged par ticipants rank the program as useful. Development Community framework of HIV best
practices (Southern Africa HIV and AIDS Informa-
In Zimbabwe, the Zvandiri Programme tion Dissemination Service n.d.).
(Zvandiri means “as I am”) provides psychoso-
cial suppor t to ALHIV. Operational for over five The successful Collaborative HIV Prevention
years, services are decentralized to more than 20 and Adolescent Mental Health Program
communities in the Harare region. Services use (CHAMP+) provides multidisciplinary care for
bidirectional referrals from clinics to community adolescents in the United States and has been suc-
services to strengthen the care and suppor t of AL- cessfully adapted to be used with ALHIV in South
HIV. Zvandiri ensures strong mental health, life skills Africa (AIDSTAR-One n.d.a; Petersen et al. 2010).
training, vocational training, one-on-one counseling, Providing family-based HIV prevention and mental
and adherence suppor t linking to hospitals and clin- health treatment to a wide range of target popula-
ics that provide ALHIV treatment services (South- tions that include ALHIV, the intervention can be
ern Africa HIV and AIDS Information Dissemination applied in many different contexts, yet adaptation
Service 2010). Table 9 details the Zvandiri Program must be informed by local knowledge and empiri-
model. cal evidence to ensure cultural congruence. Using
a person-in-environment approach, the program
Level of Evidence: Programmers should con- works to understand complex family processes
sider adapting this model to their context and, at and cultural contexts, regardless of the microlevel
minimum, offer some level of psychosocial suppor t theories used to facilitate behavior change. The
TABLE 9. THE ZVANDIRI MODEL FOR PSYCHOSOCIAL CARE FOR ALHIV IN ZIMBABWE
Early steps Next steps
Clinical care: Community care:
• Diagnosis • Support groups: psychosocial support, counseling, positive living education,
• Monitoring nutrition, gardens, treatment literacy
• Management of opportunistic • Community outreach: psychosocial support, counseling, home-based care, positive
infections living education, child tracing, treatment literacy, caregiver training, adolescent sexual
• Counseling and reproductive health
• ART • Adherence supporters: psychosocial support, counseling, home-based care, positive
• Prevention of mother-to-child living education, child tracing, treatment literacy
transmission • Support and training center: psychosocial support; counseling; home-based care;
positive living education; adolescent-led psychosocial support training; adolescent-
led information, education, and communication materials; recreation activities; skills
training; education and medical assistance.
Providers: Provider:
• Ministry of Health and Child • Zvandiri Community Care and Support Model
Welfare
• City Health Private Clinics
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
19
LIVING WITH HIV IN SUB-SAHARAN AFRICA

22. program emphasizes building social networks for Adolescents’ unique needs described throughout
suppor t, such as protective peer suppor t networks this brief need to be taken into account when
to strengthen adolescent autonomy, which is key to considering the implementation of ART as preven-
transitions (Bhana et al. 2010). tion strategies and approaches. A critical need is
to focus transition programs on strengthening the
Level of Evidence: Programmers should con- ability of young women and men to manage their
sider adapting this model to their context and, at own care to better understand the benefits to
minimum, offer some level of psychosocial suppor t themselves and others of taking ART and adhering
delivered by lay and peer counselors. No random- to the regimen (The Lancet 2011a). Despite the
ized control trial specifically looking at the impact complexity associated with transitions, much more
on perinatally infected adolescents exists. However, can be done to ensure the process is smooth, to
CHAMP-South Africa has one randomized control promote self-management to improve ALHIV own
trial that showed the program strengthened pro- health, and to contribute to reduced transmission
tective factors that are associated with less risky and new infections.
behavior for adolescents in South Africa (Bell et al.
2008). What follows are specific, actionable recommenda-
tions for policymakers and program planners that
provide a broad framework for consideration. As
FINAL RECOMMENDATIONS individuals work in collaboration to develop transi-
tion programs, every effor t should be made to take
The multifaceted health and psychosocial needs of into consideration these recommendations and to
ALHIV should have a high priority on the political make decisions about how to include them in their
agenda. Until this happens, interventions that re- plans based on the specific situation and context.
main accessible among this population in the higher Recommendations are provided in broad areas:
resource countries will remain inaccessible to 90 program/service delivery, training and capacity
percent of children living with HIV in resource-con- building, policy, and monitoring and evaluation. Gen-
strained settings (WHO 2011a). In addition to evi- eral recommendations are provided, as well as spe-
dence-based approaches, findings such as the recent cific recommendations for personal-/community-
evidence that suppor ts using ART to prevent HIV based programs and clinical effor ts where relevant.
transmission among discordant couples (Cohen et It is critical that planners and implementers address
al. 2011) should be considered and addressed by all the recommendations in each of these categories
transition programs. However, it should be noted to ensure comprehensive, sustainable programs are
that the research to date has focused on adults. implemented.
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23. PROGRAM/SERVICES RECOMMENDATIONS
General recommendation Recommendations for personal-/ Recommendations for clinical
community-based programs programs
Ensure services are flexible, Initially, services should be family and If a physical transition will occur, pediatric
client-focused, and adolescent- adolescent focused, which includes peer providers and clinics must make transitions
friendly. support services for both the adolescent a standard of care and develop a transition
and the caregiver/families, and flexible roadmap, detailing how the process occurs.
Review and capitalize on the to adapt to the adolescent’s growing
resiliencies of adolescents and autonomy. If the child is transitioning to adult care
their families when developing within the same clinic, services must
services. understand the unique nature of adolescent
care and work with the adolescent to
transition to self-care.
Disclosure must be a Do not physically transfer ALHIV until Designate one pediatric and one adult
prerequisite for transition. they are able to independently attend provider to be in charge of transition.
adult clinics and are past the growth/
Establish a clear timeline for puberty stages, as per country guidelines. Develop and support strong communication
transition to occur to ensure and connections between these two
the process is facilitated by As an ALHIV transitions to self-care, providers.
the provider, the adolescent, make sure that the provider works with
and his or her family/caregiver the client to promote autonomy in a If the same provider, encourage self-care
to promote adolescent developmentally staged manner (use (use Annex 1 Comprehensive Transition
independence. Annex 1 Comprehensive Transition Checklist) and make linkages with
Checklist). appropriate community care services.
Cultivate high levels of Implement strong referral networks to Review and monitor transition with the
adolescent participation and be support the multiple needs of ALHIV. client and family members throughout the
youth owned. process.
Link adolescents with appropriate
adolescent materials and peer networks. Implement responsive, robust systems to
(such as those available at http://archive. identify early defaulters and loss to follow-
k4health.org/toolkits/alhiv) up.
Include a multidisciplinary Integrate strong psychological and social Ensure adolescent and family counseling and
approach to ensure the unique services into existing clinical care and testing services are available and accessible.
needs of adolescents are treatment for adolescents. Provider-initiated counseling and testing
covered to the extent possible. should be offered to families after one
Link to existing services and programs member is diagnosed with HIV.
for orphans and vulnerable children.
Make referrals for family planning and safe
pregnancy counseling.
TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS
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LIVING WITH HIV IN SUB-SAHARAN AFRICA