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AIDSTAR-One Technical Brief: Transitioning of Care and Other Services for Adolescents Living with HIV in Sub-Saharan Africa

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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 …

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.

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  • 1. TRANSITIONING OF CARE ANDOTHER SERVICES FORADOLESCENTS LIVING WITH HIVIN SUB-SAHARAN AFRICATECHNICAL BRIEFJUNE 2012This publication was produced for review by the United States Agency for International Development. It wasprepared by the AIDSTAR-One project.
  • 2. AIDS Support and Technical Assistance Resources ProjectAIDS 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 ScientificSystems, Inc., University of Alabama at Birmingham, the White Ribbon Alliance for Safe Motherhood, and WorldEducation. The project provides technical assistance services to the Office of HIV/AIDS and USG country teamsin 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, SusanKasedde, Harry Moultrie, Refilwe Sello, Takira Stokes, and Vicki Tepper. Additional thanks for the feedback from IanHodgson, Rick Olson, Ed Pettitt, Mychelle Farmer, and Rena Greifinger. And finally, a special thanks to the UnitedStates Government colleagues who provided technical input, technical guidance, vision, and professional insightthat 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 forInternational Development or the United States Government.AIDSTAR-OneJohn Snow, Inc.1616 Fort Myer Drive, 16th FloorArlington, VA 22209 USAPhone: 703-528-7474Fax: 703-528-7480E-mail: info@aidstar-one.comInternet: aidstar-one.com
  • 3. INTRODUCTION Evidence shows that poorly planned transitions can result in harmful consequences such as treatmentS ub-Saharan Africa has the highest HIV burden in the world, with 67 percent of the estimated 34 millionpeople 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 educationalare 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 limited2011a). 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 mentaleither for their own clinical care or for the prevention transition to adulthood. Although children perinatallyof 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 needit was assumed few children infected during this peri- similar support services. This technical brief thereforeod 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 projectionssuggest that 36 percent are slow progressors andhave a median survival age of 16 even without access POPULATION OF CONCERNto treatment (Ferrand et al. 2009a). Moreover, manychildren who acquire HIV during the perinatal period As vertically infected adolescents (aged 10 to 19and 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 andmunity support and health systems in sub-Saharan develop a stronger understanding of their uniqueAfrica are not equipped to address (Ferrand et al. health and social support needs, which many times2010; 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 ofcordant couples (Cohen et al. 2011), decisions about HIV, with a history of opportunistic infections, morewhen to start treatment, adherence, and retention complicated comorbidities, different mental healthbecome even more critical to address among adoles- support needs, and more resistant mutations thatcents 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 andand 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 andindividualized prevention strategies to help reduce behaviorally infected adolescents do not know theirfurther 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 andpopulation 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 transitionpose 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 infectedhave 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 outlinessupport services, as exhibited in Table 2. For those essential care, support, and treatment services toperinatally infected, important care and support dif- best meet the multiple unique needs of ALHIV. Thisferences include specific psychosocial, disclosure, and technical brief also offers promising approaches andstigma issues that are related to the fact that they outlines a model of adolescent transition of HIV careacquired 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 thesevices, 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 providerSource: 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 NoneSource: Olson and Kasedde 2012.DEFINITION OF TRANSITION to the adult focused health care” (Reiss and Gibson 2002, 1309). Usually starting with a partial disclosureTransitioning 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 theychological, and educational or vocational needs of are positive, either through disclosure or testing. Inadolescents 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 atus. 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, andhealth 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 realprograms must be tailored to a patient’s individual problems. Providing an opportunity for ALHIV tocapacities, readiness, and developmental age. A “one- build upon their talents operating from a strengthssize-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. Regardlessyoung 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, andadult care provider are the same person, so having a community strengths. It is from this initial point thatstrong understanding of the unique needs of adoles- transition policies and programs must understandcents 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 besmooth and planned in advance. Services that re- UNIQUE NEEDS OF ADOLESCENTSmain uninterrupted produce more optimal health LIVING WITH HIVoutcomes. 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 individualand their family members/caregivers. Special con- undergoes major social, physical, and psychologicalsideration 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 ofes (Ferrand et al. 2010; Hodgson et al. 2011), creat- parents and other relatives (Andrews, Skinner, anding 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 etADOLESCENT NEEDS al. 2007; Miles, Edwards, and Clapson 2004; Ross et al. 2010; While et al. 2004; WHO 2009). It is impor tantTransitioning adolescents into adult HIV care is not a that transition programs and policies recognize andsimple 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 anadolescent undergoes. With clear planning and fore- Stigma is one of the most difficult issues to addressthought, the process can create a sense of partner- with an HIV diagnosis, regardless of how old peopleship 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 transition4 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 transitionpublic 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 roleclosure of their diagnosis from their family/caregiver family plays in providing social support to peopleor health care provider (WHO 2011b). Contending living with HIV (Brown, BeLue, and Airhihenbuwawith stigma and the psychological, physical, and social 2010). Many families have been severely challengedchanges 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 incomeThe cultural context, beliefs, and barriers related available to support adolescents as they transitionto stigma and living with HIV are widely different (Nachega et al. 2010). A recent study among ALHIVthroughout 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 withworking 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’ specialRensburg 2009). needs. This environment may increase the vulnerabil- ity of ALHIV and may reinforce the need to focus onINDIVIDUAL AND ENVIRONMENTAL NEEDS strengthening health systems to be able to respond to the reality facing so many adolescents (HodgsonPsychosocial Adjustment et al. 2011). Many ALHIV rely on caregivers, who may be sick themselves, to administer and remindPsychosocial 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 (bothThe 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 moreily factors, and the large numbers of children living likely to miss health appointments and had less adultwith HIV in Africa that are also orphans can find this supervision compared to youth who did not loseadjustment enormously difficult (Brown, Lourie, and their mothers to HIV (Andrews, Skinner, and ZumaPao 2000; Petersen et al. 2010). Programs need to 2006). This has serious implications for ALHIV, and itaddress psychosocial development and work with reinforces the need to include family and caregiversALHIV to understand their family environment, to in the transition process to strengthen and suppor tfacilitate 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 doyoung people’s self-management within the context not have HIV (Battles and Wiener 2002; Fielden etof their family. Evidence shows ALHIV have stronger al. 2006; Lee et al. 2006; Petersen et al. 2010; Rosshealth outcomes when they have higher levels of pa- et al. 2010; Scharko 2006). Mental health issues canrental/caregiver involvement (Naar-King et al. 2009a; result in a lower quality of life, faster progression ofPetersen 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 levelsof psychological coping mechanisms and adherence Transition programs and policies should include aamong ALHIV (Battles and Wiener 2002; King et al. strong focus on mental health and should provide2009; Petersen et al. 2010; Williams et al. 2006). Ad- or refer for effective mental health and psychosocialditionally, the benefits of psychological interventions, support to improve the quality of life and well-beingpeer support approaches, and social and economic of ALHIV. Key models to explore include a focus onsupport for ALHIV can lead to stronger levels of peer support and using lay counselors to strengthenadjustment (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 Healthreinforced through transition. Although this requiresmore resources, the benefits greatly outweigh the Sub-Saharan Africa has the highest rates of teenagecosts. pregnancy in the world, with many adolescent girls married by the age of 15 (Clark 2004; Laksi andPsychosocial Well-being and Mental Health Wong 2010). Often, female ALHIV are diagnosed upon entering antenatal care. Among boys, there isAdolescents living with HIV have a higher need for a wide range in sexual debut and little interactionpsychosocial 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 navigatedue to both psychological reasons and the effects of transitions must be equipped to deal with clinicalHIV 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, andola, and Carlson 2008; Fielden et al. 2006; Ross et Stavola 2006; Ferrand et al. 2010). When childrenal. 2010; Steele, Nelson, and Cole 2007; Van Rie et living with HIV reach adolescence, they are likely toal. 2007). Many times, psychiatric illnesses emerge examine their sexuality in the context of their HIVfor the first time during adolescence, and providers status. Many adolescents will begin to experienceshould be aware of how common the comorbidity sexual desire and are likely to engage in intimateof clinical depression and HIV is among adolescents relationships, including same-sex relations. Real fearswho were infected perinatally (Battles and Wiener exist regarding disclosure, rejection, and the potential2002; DeLaMora, Aledort, and Stavola 2006; Fielden for HIV transmission to their partners. The evidenceet 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 alcoholstrengthen 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 motivationalations, 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 Disclosureaccess to confidential sexual and reproductive healthservices, which includes adherence to medications HIV disclosure is a continuous process of informingto 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 thening should be part of the transition, and ALHIV child into account (WHO 2011b). The process ofwho desire to have children in the future, or who HIV disclosure is multidimensional and complex, andare 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 aEvidence 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 HIVimportance of adherence to ART and the need to status to other family members, school teachers, orprovide 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, schoolpression. 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 HIVtransmission during sex (The Lancet 2011a). It should In particular, the disclosure of an adolescent’sbe noted that these research findings apply to adults HIV status to other family members, communityliving with HIV; therefore, more research is needed to members, and school teachers must be approachedinvestigate whether benefits of ART as a prevention with care. The primary question should be whatmode applies to this important population as well. would be the benefit of disclosure to the ALHIV and do these benefits outweigh any potential risks? ThereAlcohol and Substance Use is limited data supporting the benefits of disclosure to these groups, though there may be personalThere 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 overlappinga strong link between substance use and a higher disclosure by the adolescent to different audiencesincidence 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 numerousAfrican countries means the decision of parents or benefits including higher adherence rates, increasedcaregivers to tell their children is accompanied by levels of social support, higher self-efficacy, improvedfears related to stigma and is seldom done before psychological adjustment, and decreased behavioralidentifying a strong supportive network (Daniel et problems among ALHIV living in the United Statesal. 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, andprerequisite to transition because only when chil- Airhihenbuwa 2010; Menon et al. 2007; Petersendren learn their status can they transition to self- et al. 2010; Steele, Nelson, and Cole 2007; Vaz etmanagement of HIV. Evidence shows children who al. 2010; WHO 2011b, Wouters, Meulemans, andare aware of their status have better psychosocial van Rensburg 2009). A recent study from Ugandaadjustment than those who do not know their status. showed participation in HIV-positive peer suppor tHowever, 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 consequencesPetersen 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 mustFor 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 increasedliving with HIV, and each individual must weigh the marginalization of the individual and his or her familybenefits 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, andcomplexities, 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 programMany children living with HIV in sub-Saharan Africa is the need to ensure that confidentiality, consent, andhave lost one or both parents, a caretaker, relative, counseling are provided, and all testing for adolescentsor other sibling to HIV (Cluver, Gardner, and Oper- should include referrals to post-test support services.ario 2007; Daniel et al. 2007; DeLaMora, Aledort, andStavola 2006; Earls, Raviola, and Carlson 2008; Petersen Self-management of Clinical Careet al. 2010), and this loss and resulting bereavement canimpact 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 duringon 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 theircountries and cultures (Cluver, Gardner, and Operario caregivers hesitate to leave pediatric care for adult2007; Daniel et al. 2007). The transition process must care because leaving a known setting and trustedacknowledge and monitor grief to ensure strong psy- providers can produce anxiety (Machado, Succi, andchosocial 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 moreCarlson 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 safeHIV Testing relationship for an unknown one. To minimize stress, the transition should use an age and developmentallyAs mentioned previously, many children in sub-Saha- appropriate approach of increased self-managementran Africa may not know their HIV status when they and patient autonomy. There is a range of differencereach 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 tobut 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 andHIV but have never been tested. Many barriers exist may need to simultaneously learn to manage theirto HIV testing because parental or guardian consent own care as well as care for a child. Table 4 providesis needed in most countries to test minors (Ferrand information to consider in building the capacity ofet al. 2009a). As a response to this, South Africa re- ALHIV to manage their care. When reviewing thiscently 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 ofwithout parental or guardian consent (The Lancet care, if at all, and may require a referral.2011b). There are also recommendations to introduceroutine 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 issuesNote: 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 sameproviders 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 evidenceresponsibility for care among ALHIV in sub-Saharan shows ALHIV have lower rates of adherence toAfrica; however, a range of studies show that issues ART than adults in Southern Africa. This results inrelated to self-efficacy, coping, resiliency, locus of con- lower rates of viral suppression and higher rates oftrol, collective/familial support, education level, and viral rebound after initial suppression (Nachega etthe power of disclosure are all key considerations al. 2009). For many ALHIV infected perinatally, thewhen 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 ofcare (Bachanas et al. 2001; Battles and Wiener 2002; an issue as ART regimens become more manageableBrown, 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, andPetersen et al. 2010; Vijayan et al. 2009; Williams et al. individual barriers to treatment adherence for ALHIV2006; 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 includedreach adolescence and adulthood, the likelihood that ALHIV demonstrated a decline in adherence ratesthey will receive second- and third-line medications over the one-year time period studied. Many of thegrows, 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, agoing 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 disclosureAdherence, 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 toALHIV and is intimately linked to their ability to adherence that pertain to ALHIV, and to perinatallymanage 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-care2011a). Among those on ART, the complexity of via transition (see Table 5).routinely accessing clinical services and adhering todaily 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 loweracher 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 • StigmaSource: Nachenga et al. 2009.All programs that focus on transitions among perina- this emerging group, and policies remain nascent attally infected adolescents must stress the importance best. Communication between all parties remainsof adherence to a daily and complex drug regimen one of the largest barriers and should be prioritizedand routine clinical monitoring. Some evidence exists throughout transition. See Table 6 for an outline ofdetailing the clinical benefits of brief interventions to many of the barriers to transition.improve adherence rates among ALHIV. Providerswho initiated four sessions of motivational interview- PERSONAL/ENVIRONMENTAL BARRIERSing using the information, motivation, and behavioralmodel strengthened the ability of ALHIV to manage Adolescent Living with HIVtheir diagnosis, and improved adherence (Amico2011; 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 knowledgea 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, thesociated 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 inintrinsic behaviors (e.g., values and satisfaction) is clinical care and social suppor t programs. Evidencemore effective than on extrinsic factors (e.g., guilt shows that younger adolescents are more likely toand rewards; DiIorio et al. 2008; Naar-King et al. adhere to their medications, with adherence levels2009b; 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 theirIDENTIFY 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/Caregivervider, client, and family levels and must be addressedto 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 to12 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’sto have more autonomy as they grow and develop. environment to identify and maximize protectiveThis flexibility will help ensure that strengths and factors that will suppor t transition and to minimizecoping skills are optimized through the process the negative influences that will make transitionwhile 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 strongerwork can facilitate leadership skills among both ad- ability to solve problems, realize their potential, andolescents 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 BARRIERSThe environment surrounding ALHIV may contain Providernumerous barriers associated with transition, in-cluding stigma, lack of suppor tive community pro- In many countries, adolescent HIV care is not agrams 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 careNote: 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 sameproviders 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 tcare issues. Being sensitive and knowledgeable services. South Africa has a National Adolescentabout the special needs of adolescents is impor tant, Friendly Clinic Initiative accreditation program toas is maintaining a client-centered focus that pro- improve the quality of adolescent health ser vices atmotes 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 healthmental manner, with privacy and confidentiality at needs. A recent evaluation of this effor t showedthe forefront of all interactions. Many adolescents that setting standards for adolescent care usingmay not know their status, and disclosure is often adolescent-friendly criteria improves the quality ofa 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 PoliciesHIV is surrounded by stigma and discrimination,providers must be welcoming and open, and must The lack of a clear adolescent health policy thatalso be able to understand and be empathetic to includes ALHIV is the key barrier at the policy levelthe complex needs of ALHIV. Providers at all levels across countries. A first step is to acknowledgeof service delivery should talk to their clients about the need for and actually define self-managed carethe 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 childrenmust discuss and promote personal development reach adolescence without knowing that they areof 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 beshould 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 diagnosedHealth 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 LOOKis an oppor tunity to strengthen the integration of LIKE?adolescent health services at all levels, includingpolicy, 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 informationand their family/caregivers. Adolescents need to be and outlines key guiding principles to follow whencomfor 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 throughoutsystems should have strong bidirectional refer- the process. Transition should begin at the moment14 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 ofadolescents, and their caregivers plan their future. passage.TRANSITION IS A PROCESS MINIMUM PACKAGE OF SERVICESTransition 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 outlinesThere is not a “right time” for transition, and it does an adaptation of a transitional plan that was recentlynot 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 Africarent and future caregiver(s) over a number of years. where the same set of providers may work with allFlexibility will ensure those involved in the process those living with HIV—adolescents, children, andcan recognize and respond to the unique needs of adults. Bidirectional relationships that encourageALHIV. 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 transitionscollaboration with families/caregivers and provid- (Maturo et al. 2011), and the model has bidirectionalers. 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 MODELver tically infected ALHIV. This approach is par ticu-larly relevant in low-resource settings because theresilience model looks at what exists, examines theprotective factors that help individuals and theirfamilies cope with HIV, and works to minimize riskfactors and situations. This approach moves awayfrom a deficit perspective and identifies strategies thatwork 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 modelshould be flexible and progressive, allowing the adoles-cent to take on more and more responsibility for his orher care. Mistakes will be made; however, the processshould 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; LaursenPRINCIPLES 2000; Mar tinez et al. 2003; Miles, Edwards, and Clapson 2004; Petersen et al. 2010; Punpanich etDEVELOPMENTAL APPROACH AND al. 2008; Rao et al. 2007; Schenk et al. 2010; Vaz etFOCUS 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 manyindividuals, but the recommendation is to star t the existing programs is a noted weakness.process early or as soon as the child knows he orshe is HIV-positive. The transition towards self-care The most successful programs cultivate high levelsshould 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 etabout his or her hopes and fears for the future. As al. 2010; Punpanich et al. 2008; Rao et al. 2007; Rossadolescence is a time marked by continuous change, and Cataldo 2010). Table 8 discusses effective waysthe transition to self-care and in some cases to to include ALHIV in the process of transition.adult services in a different clinical setting, shouldbegin 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 PROCESSiorally, clinically, and psychologically ready. Physical Actions to take Where totransition should take into consideration the capac- implementity of the identified adult clinic to meet the needs • Form an ALHIV transition Any of the actionsof ALHIV. To help ALHIV navigate new health set- advisory board may be implementedtings, he or she should be suppor ted to talk about • Create a transition mentorship at a variety of carethe process and develop a timeline with his or her program (older adolescents settings. The types mentor younger) of programs whereprovider, family, and peers. Transition should proac- • Engage ALHIV in research, these actions may betively assess the client’s progress and develop cop- monitoring, and evaluation relevant include:ing mechanisms and strategies to address potential • Allow ALHIV to be decisionor real barriers and stressors associated with the makers • HIV clinical services • Engage ALHIV in communications, • HIV communityprocess. advocacy, and publicity and family services • Engage ALHIV as service quality • Policy makingADOLESCENT CENTERED AND consultants actions/programsADOLESCENT LED • Engage ALHIV in administration, • HIV advocacy management, and program efforts/programs. planningCare programs should be designed with high • Support ALHIV peer promotion/ Within a singlelevels of involvement and par ticipation from the education and social networks program, activitiespatients. Transitional services should be age and • Engage ALHIV in community may be implemented outreach at multiple servicedevelopmentally appropriate and should promote • Engage ALHIV as trainers delivery sites, usingself-management skills that include aspects of self- • Engage ALHIV as staff or consistent approachesdetermination, 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 Fauricomplex health and psychosocial needs (Andrews, (2006) define family-centered care as a par tnershipSkinner, and Zuma 2006; Brown, Lourie, and Pao with the patient and his or her family operating on2000; 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 canet 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 employEvidence strongly suppor ts a comprehensive, mul- family-centered care that targets the specific needstidisciplinary approach that engages families to best of adolescents and their families/caregivers, takingmeet the clinical, psychological, and social needs of their different developmental needs and householdALHIV. 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; Petersenservices, 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 isver 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 caregiversapproach can provide stronger linkages to the because both are key to ensuring strong continuityneeded 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 resiliencytioned as a way to best meet the complex and multiple within the individual and the family, and recognizeneeds of all ALHIV (Brown, Lourie, and Pao 2000; Fair, that there is no single answer that will apply for allSullivan, and Gatto 2010; Johnson et al. 2003; Kabore et ALHIV and their families. Also, as ALHIV reach 19al. 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, providersFAMILY/CAREGIVER CONTEXT should work with ALHIV to identify specific risk and protective factors as they occur and documentThe role of family and caregivers is constantly rede- any commonalities to address and minimize thefined 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 FOCUSEDtimes, caregiver involvement is crucial to a youngperson’s success. Programs based on a family-cen- Transition should be holistic because adolescencetered 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 Clinicalrequirements, 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 Botswanaand 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 theZambia shows that the clinical aspects related to unique needs of ALHIV, primarily those who wereadolescent care are more frequently provided and perinatally infected. The clinic opened in 2003 forstronger than the social aspects, noting the need children living with HIV and their families; at theto increase linkages with social programs during time, they had a few adolescent clients. Now, thesetransition (Hodgson et al. 2011). The diversity of children are reaching adolescence, and ser vices arethe physical, social, and psychological needs of provided for over 600 adolescents. Services includeALHIV reviewed here point strongly to the need clinical treatment, with specialized care and suppor tto integrate stronger psychological and social programs to approach puber ty and adolescenceservices into existing clinical care and treatment positively. Bimonthly adolescent forums are heldfor ALHIV (Earls, Raviola, and Carlson 2008; with social workers and/or psychologists, leading allKabore 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 psychosocialholistic and multidisciplinary services for ALHIV issues. The multidisciplinary forum includes physi-remains lacking globally, with minimal effor t made cians, nurses, psychologists, social workers, andto address these gaps in sub-Saharan Africa (Earls, auxiliary staff. Through the adolescent forum andRaviola, and Carlson 2008; Ferrand et al. 2010; other innovative interventions, the program strivesGilliam et al. 2010; Petersen et al. 2010). Long-term to strengthen staff capacity to provide the highestand 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 nongovernmentalservice 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 toWHAT EXISTS grow. This is a program through which over 600 AL- HIV gather to “build positive relationships, improveEVIDENCE OF GOOD PRACTICE their self-esteem, and acquire life skills through peer mentorship, adult role-modeling, and structuredIn general, comprehensive services to suppor t activities, ultimately leading to improved clinical andadolescents 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 growingbody of evidence to guide programs and policy to Level of Evidence: Programmers should considerbest respond to the comprehensive needs of AL- adapting relevant aspects of this model to theirHIV 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 may18 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 theof 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 regardednational Pediatric AIDS Initiative 2010) and teen- as a best practice based on the Southern Africanaged 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 Preventionyears, services are decentralized to more than 20 and Adolescent Mental Health Programcommunities in the Harare region. Services use (CHAMP+) provides multidisciplinary care forbidirectional 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 SouthHIV. 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 mentaland 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 beern Africa HIV and AIDS Information Dissemination applied in many different contexts, yet adaptationService 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 programLevel of Evidence: Programmers should con- works to understand complex family processessider adapting this model to their context and, at and cultural contexts, regardless of the microlevelminimum, 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 throughoutsuppor t, such as protective peer suppor t networks this brief need to be taken into account whento 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 theLevel of Evidence: Programmers should con- ability of young women and men to manage theirsider adapting this model to their context and, at own care to better understand the benefits tominimum, offer some level of psychosocial suppor t themselves and others of taking ART and adheringdelivered by lay and peer counselors. No random- to the regimen (The Lancet 2011a). Despite theized control trial specifically looking at the impact complexity associated with transitions, much moreon perinatally infected adolescents exists. However, can be done to ensure the process is smooth, toCHAMP-South Africa has one randomized control promote self-management to improve ALHIV owntrial that showed the program strengthened pro- health, and to contribute to reduced transmissiontective 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. AsFINAL RECOMMENDATIONS individuals work in collaboration to develop transi- tion programs, every effor t should be made to takeThe multifaceted health and psychosocial needs of into consideration these recommendations and toALHIV should have a high priority on the political make decisions about how to include them in theiragenda. 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 capacitypercent 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 addressal. 2011) should be considered and addressed by all the recommendations in each of these categoriestransition programs. However, it should be noted to ensure comprehensive, sustainable programs arethat the research to date has focused on adults. implemented.20 A I D S TA R - O N E T E C H N I C A L B R I E F
  • 23. PROGRAM/SERVICES RECOMMENDATIONSGeneral recommendation Recommendations for personal-/ Recommendations for clinical community-based programs programsEnsure services are flexible, Initially, services should be family and If a physical transition will occur, pediatricclient-focused, and adolescent- adolescent focused, which includes peer providers and clinics must make transitionsfriendly. 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 growingresiliencies of adolescents and autonomy. If the child is transitioning to adult caretheir families when developing within the same clinic, services mustservices. 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 adultprerequisite 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 communicationtransition to occur to ensure and connections between these twothe process is facilitated by As an ALHIV transitions to self-care, providers.the provider, the adolescent, make sure that the provider works withand his or her family/caregiver the client to promote autonomy in a If the same provider, encourage self-careto promote adolescent developmentally staged manner (use (use Annex 1 Comprehensive Transitionindependence. 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 theadolescent participation and be support the multiple needs of ALHIV. client and family members throughout theyouth 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 andapproach 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 testingcovered 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 21 LIVING WITH HIV IN SUB-SAHARAN AFRICA
  • 24. TRAINING/CAPACITY BUILDING RECOMMENDATIONS General Recommendations for personal-/community- Recommendations for clinical recommendation based programs programs Develop quality Provide adolescents with training on the process of Develop human resource systems that improvement standards transition, which will include comprehensive transition offer adolescent health trainings for that are targeted to checklists (see Annex 1) to support their path to self- providers to strengthen preservice, improve the process of management. Training and capacity building should be a in-service, and refresher trainings that transition. continuous process. focus on caring for the special needs of adolescents. Develop clear training Provide training to the caregiver and family on the Provide training for community health requirements for process of transition, including checklists to transfer workers and for the adult program adolescent care and responsibility over to the adolescent throughout the support team who will receive continuous supervision process (see Annex 1). transitioned adolescents in the adult structures that provide care facilities. supportive supervision Develop a cadre of trained peer educators and approaches for those supportive partners who have gone through the providing care and transition process to work directly with adolescents. multidisciplinary services for ALHIV. Explore links and connect with orphans and vulnerable children trainings in-country.POLICY RECOMMENDATIONSGeneral recommendations• Define adolescence and recognize adolescents’ need for health care/specialization, taking into account evidence, best practice, legal norms, and local culture and customs.• Develop a common definition of transition for adolescents with chronic illnesses, such as HIV.• Implement clear policies on the age of consent for HIV testing to reduce barriers for adolescents.• Develop self-management transition interventions as a standard of care for children living with HIV.• Cost, budget, and link adolescent health programs to funding at the country level.• Support advocacy and multisectoral partnerships outlining country-specific priorities and specific goals within governments (ministries of health, youth and vulnerable children, and social support, etc.), among civil society, and donor governments.• Provide preservice and ongoing health and community care training specific to ALHIV, as part of the standard package of training for providers.• Establish clear data collection procedures for this age group.MONITORING AND EVALUATION RECOMMENDATIONSGeneral recommendations• Develop country-appropriate routine monitoring indicators for transition for both perinatally and behaviorally infected ALHIV that include predictors for success, using clearly defined indicators, along with numerators and denominators as appropriate.• Where routine data on adolescents is not being collected, establish routine data collection that is integrated within national systems. This will help to provide accurate estimates of populations in need (adolescents aged 10 to 19). Data should be disaggregated for adolescent age ranges with young adolescents at 10 to 14 years and older adolescents from 15 to 19 years.• Advocate for the disaggregation of coverage estimates by age group and regions (e.g., rural versus urban).• Monitoring and evaluation frameworks should describe data analysis and use plans developed for the national, regional, district, community, and facility levels.• Develop a research agenda and conduct studies/operations research to address barriers and develop good practice models at the country level. Plans should include both quantitative and qualitative studies that answer key service delivery and health outcome questions for ALHIV.22 A I D S TA R - O N E T E C H N I C A L B R I E F
  • 25. ANNEX 1COMPREHENSIVE TRANSITION CHECKLISTThis checklist outlines the minimum package of services for ALHIV and is provided as guidance for the providerto review with the adolescent and the family/caregiver and to help establish self-management goals. The columnon the left describes the expected behavior and the next column describes the age range in which that behav-ior is expected to take place. Discuss each behavior with the client and set realistic goals together. Document ifthe goal was completed and re-establish goals where additional support is needed. Refer to this sheet to routinelyestablish new goals and to monitor the progress of goals that have already been established. A transition should beconsidered when the adolescent has accomplished all tasks within the plan. Comprehensive Expected Discussed Goal for Goal If goal not Goal Notes transition age range of (√) completion completed? completed, completed? checklist accomplish- (month (Y/N) new goal (Y/N) ment (Years and year) date (month of age)* and year) Interact directly Below 11 with the health care team and ask questions. Explain knowledge Below 11 surrounding HIV. Identify symptoms Below 11 of grief, and has identified person who they can speak with when grieving. Describe stigma Below 11 and its ill effects. Current with Below 11 immunizations and health screenings. Engage in positive Below 11 living behaviors (nutrition, exercise). Able to explain 11–14 what HIV is. Able to explain 11–14 what CD4 cells are. Able to explain 11–14 what viral load is. Verbalize the 11–14 names and dosages of medications. TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS 23 LIVING WITH HIV IN SUB-SAHARAN AFRICA
  • 26. Comprehensive Expected Discussed Goal for Goal If goal not Goal Notestransition age range of (√) completion completed? completed, completed?checklist accomplish- (month (Y/N) new goal (Y/N) ment (Years and year) date (month of age)* and year)Verbalize rules for 11–14taking medications(with food, etc.).Discuss pros/cons 11–14of contraceptionoptions.Explain sexu- 11–14ally transmittedinfections, includingtransmission andprevention.Explain implications 11–14of HIV diagnosis onpregnancy.Abstain from drugs 11–14that have not beenprescribed, such asalcohol and ciga-rettes, and is awareof risk reductionbehaviors.Independently gives 11–14medical history.Explain reasons 11–14for disclosure andvarious disclosuremethods.Attend first peer 11–14support group.Verbalize pos- 15–24sible side effects ofmedications.Verbalize when 15–24and how to call adoctor.Verbalize when 15–24and how to accessurgent/emergencycare.Identify members 15–24of the health careteam, their roles,and how to con-tact them.24 A I D S TA R - O N E T E C H N I C A L B R I E F
  • 27. Comprehensive Expected Discussed Goal for Goal If goal not Goal Notes transition age range of (√) completion completed? completed, completed? checklist accomplish- (month (Y/N) new goal (Y/N) ment (Years and year) date (month of age)* and year) Verbalize knowl- 15–24 edge surrounding other available community ser- vices for ALHIV and access them independently. Fill prescriptions 15–24 and obtain refills independently. Take medication 15–24 independently and is adherent to medications. Independently 15–24 makes appointments. Independently sets 15–24 up transportation for appointments. Keeps a calendar of 15–24 appointments and routinely attends appointments.Adapted from Bartlett et al. 2011.* Expected ages may be different dependent on your setting, culture, and the client’s cognitive and behavioral development. Adapt accordingly. TR ANSITION ING OF C AR E AN D OTHER SERVICES FOR ADOLESCENTS 25 LIVING WITH HIV IN SUB-SAHARAN AFRICA
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