AIDS Support and Technical Assistance Resources ProjectAIDS Support and Technical Assistance Resources, Sector I, Task Ord...
INTRODUCTION                                                   BOX 1: CONTINUUM OF CARE: SERVICES FOR                     ...
and Lourie 2000; Cluver and Gardner 2007) and face           well-being of perinatally-infected children (aged 0 tomultipl...
often overworked, dealing with competing priorities      take such action. Although the percent of children      and limit...
capacity of community-based resource persons    BOX 3. PROMISING PRACTICES: EARLY                     (e.g., adult volunte...
the meds and when. This is when we are able to              to initiate and sustain care. Parents and caregivers      star...
between caregiver and child. Some programs, par-                                                               BOX 5. PROM...
the point when they, and sometimes the child, learn        port the child” (provider in South Africa). Several      of the...
“You need to tell the character of the kid. Do you tell   to parents/caregivers on disclosure; skill building him fast or ...
families affected by HIV face both external stigma—        ate, as well as some of the promising practices being      the ...
ostracizing our children in school, so we go to the        to the child), so that they are then able to provideschools and...
Studies show that children are particularly affected      propriate approaches to helping a child process       in the yea...
the child, helping to facilitate communication—that                                                              BOX 11. F...
activities, etc.) to ensure that children and their         ent/caregiver) from partial to full disclosure. As-         fa...
that impact provision and uptake of the range of ser-           program-based orientations typically do not ad-vices and p...
planners and implementers have limited resources,           •	 Identify and address concerns related to the par-       the...
etc.) and reduce the burden on any one program.                                                                 BOX 13. EQ...
opportunities for interacting with other children liv-    •	 Analyze programs for any elements that promote       ing with...
•	 Tree of Life                                             Infection in Infants and Children (•	 Memory W...
King, E., M. De Silva, A. Stein, and V. Patel. 2009. Interventions for     Steele, R. G., T. D. Nelson, and B. P. Cole. 20...
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AIDSTAR-One Meeting the Psychosocial Needs of Children Living with HIV in Africa


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An abbreviated version of the Equipping Parents and Health Providers to Address the Psychological and Social Challenges of Caring for Children Living with HIV in Africa report, this technical brief documents promising practices in critical services related to the psychological and social wellbeing of perinatally-infected children in Africa. These promising practices include the identification, testing, and counseling of children so that they are linked to appropriate care as early as possible, as well as on-going support to help children and their families manage disclosure, stigma, grief and bereavement processes.

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AIDSTAR-One Meeting the Psychosocial Needs of Children Living with HIV in Africa

  1. 1. FOUNDATION FOR THE FUTURE:MEETING THE PSYCHOSOCIALNEEDS OF CHILDREN LIVINGWITH HIV IN AFRICATECHNICAL BRIEFJUNE 2011This publication was produced for review by the United States Agency for International Development. It wasprepared by the AIDSTAR-One project.
  2. 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:Particular thanks to Sara Bowsky and Vincent Wong for their technical leadership and role in all aspects of thisactivity. We would also like to thank the staff and clients of the programs that participated in technical reviews forthis paper, and to members of the project’s Technical Advisory Group. Additional thanks to United States Govern-ment colleagues: Alison Cheng, Seyoum Dejene, Julius Kalamya, Dr. Ryan Phelps, Anita Sampson, and Dr. LindaSussman.Recommended Citation:Kanesathasan, Anjala, Jennifer McCleary-Sills, Marnie Vujovic, Jonathan Brakarsh, Kgethi Dlamini, Eve Namisango,Rose Nasaba, and Katherine Fritz. 2011. Foundation for the Future: Meeting the Psychosocial Needs of Children Livingwith HIV in Africa. Arlington, VA: USAID’s AIDS Support and Technical Assistance Resources, AIDSTAR-One, TaskOrder 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, 11th FloorArlington, VA 22209 USAPhone: 703-528-7474Fax: 703-528-7480E-mail: info@aidstar-one.comInternet:
  3. 3. INTRODUCTION BOX 1: CONTINUUM OF CARE: SERVICES FOR CHILDREN LIVING WITH HIV I n 2009, 2.5 million children under 15 years were living with HIV around the world, with the vast ma- jority—2.3 million—in sub-Saharan Africa (U.N. Chil- • HIV testing and counseling as early as possible • Antiretroviral therapy and adherence; coun- dren’s Fund [UNICEF], Joint U.N. Programme on HIV/ seling and support AIDS [UNAIDS], and the World Health Organization • Opportunistic infections: prevention and [WHO] 2010). In that same year alone, an estimated treatment 370,000 children were born with HIV (UNICEF, UN- • Growth and development monitoring AIDS, and WHO 2010). For most of the history of • Immunizations the epidemic, the majority of children born with HIV • Palliative care: pain and symptom manage- in resource poor settings did not survive past infancy, ment; psychological, social, and spiritual sup- let alone early childhood (Brahmbhatt et al. 2006; port; and end-of-life care Sutcliffe et al. 2008). Now, however, recent stud- • Nutritional support, including optimum infant ies indicate that 36 percent of infants living with HIV feeding have a median life expectancy of 16 years (Ferrand • Psychosocial support: support groups and et al. 2009). Furthermore, advances in HIV testing for counseling exposed infants and children and in providing antiret- • Orphans and vulnerable children: care, sup- roviral therapy (ART) are increasingly enabling children port, and protection living with HIV to live longer and healthier lives (Mel- • Prevention services and education, including lins et al. 2004; Sopeña 2010). For these children, HIV life skills and planning for future (including is a chronic disease requiring a lifetime of continuous sexual and reproductive health) treatment, care, and support to ensure their physical • Additional support services: support to par- and mental development, as well as their emotional ents/caregivers; social welfare; legal aid; in- and psychological well-being (see Box 1; Family Health come generation activities; housing support. International [FHI] 2007). Adapted from FHI 2007. Psychosocial support (PSS) is an essential component of ongoing care for all people living with HIV. PSS is especially critical for children, creating the foundation needs of children (REPSSI 2003). While some children from which they can establish their identity and place may have acute emotional and mental health needs in society, manage their care and live positively, cope that require more sophisticated care, basic and ongo- with challenges, and plan for their future (Regional ing support from those within the child’s sphere (e.g., Psychosocial Support Initiative [REPSSI] 2003; Ro- family, relatives, friends, teachers, etc.) play an essential chat, Mitchell, and Richter 2008). PSS is the process role in ensuring emotional development as the child of meeting a child’s emotional, mental, spiritual, and matures. social needs through a variety of approaches, such as one-on-one counseling, support groups, and play While all children can benefit from PSS, research has therapy (Clay, Bond, and Nyblade 2003; Richter, Foster, shown that it is particularly critical for the health and and Sherr 2006; Rochat, Mitchell, and Richter 2008). development of children living with HIV (King et al. PSS helps to build critical resiliency in children and 2009). Children living with HIV experience more sub- supports families and caregivers to meet the multiple jective distress than their HIV-negative peers (BrownM EE T I N G T H E P S YC H OSO C I A L N EEDS O F C H I L D R EN L I V I N G W I T H H I V I N A F R I C A 1
  4. 4. and Lourie 2000; Cluver and Gardner 2007) and face well-being of perinatally-infected children (aged 0 tomultiple stressors related to HIV, including the illness 12 years) in Africa. These include the identification,and death of a parent, disclosure, stigma, discrimina- testing, and counseling of children so that they aretion, isolation, loneliness, and family conflict or uncer- linked to appropriate support as early as possible, astainty (Brown and Lourie 2000; Cluver and Gardner well as the provision of ongoing PSS to help children2007; King et al. 2009). Several studies also suggest and their families manage disclosure, stigma, and griefthat the psychosocial well-being of children and their and bereavement processes. The information pre-caregivers can improve adherence to ART and clinical sented in this brief was collected through a review ofoutcomes (Bikaako-Kajura et al. 2006; Brouwer et al. published and gray literature, as well as from inter-2000; Mellins et al. 2004; Williams et al. 2006). Given views with researchers and practitioners addressingthe importance of PSS to the long-term well-being of the clinical, psychological, and social needs of childrenchildren living with HIV, there is a critical need to en- around the world. In addition, the brief highlightssure that continuous and individualized psychological experiences of eight programs in South Africa andand social services are fully integrated within a broad, Uganda (see Box 2). Field-based technical reviews ofintegrated framework of care provided by parents, these programs included in-depth interviews and fo-caregivers, and service providers (facility-, community-, cus group discussions with program staff, parents andand home-based) and adapted over time as children caregivers of children living with HIV, and HIV-positivedevelop and mature (REPSSI 2003; Steele, Nelson, adolescents (Uganda) and young adults (South Africa).and Cole 2007). This brief is aimed at helping program planners, imple- menters, and service providers identify PSS activitiesThis technical brief describes promising practices in and approaches for younger children living with HIVcritical services related to the psychological and social and their families that can be integrated into their treatment, care, and support efforts. For more de- BOX 2. PROGRAMS PARTICIPATING IN tailed information, the final report from this activity is available at TECHNICAL REVIEWS South Africa • St. Nicholas Bana Pele Network, Free State PROMISING PRACTICES • Butterfly House, Drakenstein Palliative Hos- pice, Western Cape • Cotlands, Western Cape P rograms working in South Africa and Uganda are implementing several promising interventions that address the psychological and social needs of • National Association of Child Care Workers, children living with HIV and their families. In such Eastern Cape high HIV-prevalence, resource-constrained settings, Uganda limitations in human capacity, time, and funds com- pound the challenge of providing PSS at all levels— • Baylor Uganda, Kampala from clinics to communities, families, and individual • Joint Clinical Research Center, Mbarara caregivers and their children. In addition, many • Mildmay Uganda, Mukono (supported site caregivers and families have a limited understanding Naggalama Hospital) of comprehensive PSS and may not be able to fully • The AIDS Support Organization (TASO), appreciate why it is essential to the overall well- Masaka being of the child. Providers and caregivers alike are2 A I D S TA R - O N E T E C H N I C A L B R I E F
  5. 5. often overworked, dealing with competing priorities take such action. Although the percent of children and limited in key skills to provide quality PSS for living with HIV who remain unidentified is difficult children. to state with cer tainty, experience with home- based testing and counseling suggests that large Despite these general challenges, programs are numbers of children exposed to HIV have not been finding ways to identify children in need of services tested; one study in Uganda found that 74 percent and work with parents, caregivers, and others to of household members (in exposed households) address psychological and social development as the had never previously been tested (Were et al. 2006; child matures. A strong emotional and psychosocial Wolff et al. 2005). foundation is critical to the future well-being of children living with HIV, something that was echoed While pediatric programs have responded to by young people themselves: “When people love WHO’s guidance on the impor tance of early iden- you, you love yourself and get the strength to go on” tification and ART for infants and children, there are (youth in Uganda). still significant gaps in coverage (WHO 2008; UNI- CEF, UNAIDS, and WHO 2010). WHO repor ts that This section identifies promising practices from only an estimated 15 percent of infants exposed South Africa and Uganda that meet the psychologi- to HIV who need testing are tested in the first two cal and social needs of children living with HIV in months of life (WHO, UNAIDS, and UNICEF 2010). the following areas: 1) early identification and HIV While ART uptake has increased rapidly in recent testing and counseling of children; 2) pre- and post- years, currently 72 percent of children living with test counseling for children and caregivers; 3) sup- HIV under 15 years are not receiving ART (Banda- porting the disclosure process; 4) addressing stigma; son et al. 2011; UNICEF, UNAIDS, and WHO 2010). and 5) coping with and preparing for loss, grief, and bereavement. These promising practices also high- The program technical reviews highlighted several light how PSS programs are structuring their limited promising practices being used to identify children resources and activities to better respond to the (see Box 3). Programs that interact with children needs of children and their families, especially in or households exposed to HIV need to prioritize terms of building the skills and capacities of provid- proper HIV testing and counseling, either through ers, parents, and caregivers, as well as the children direct provision of testing services or through themselves. Some of the persistent challenges faced strong referral networks to government and com- by these programs are also presented because they munity organizations that identify, counsel, and provide important context and guidance for how test children (e.g., hospitals/clinics, social suppor t PSS can be effectively provided. systems, government channels, etc.). Programs that provide HIV-related clinical care have multiple entr y Early Identification and HIV Testing and points for identifying adults and children who may Counseling of Children be living with HIV, including prevention of mother- Of primary impor tance is the early identification of to-child transmission (PMTCT) and exposed baby children living with HIV who are in need of clinical programs, tuberculosis clinics, and palliative care care and psychological and social suppor t. Many services (or any health service where HIV testing is children are never brought into the care system par t of routine clinical diagnosis). Some approaches due to fear, stigma, lack of information, or the ab- extend HIV testing and counseling beyond a static sence of a parent or adult decision maker who can clinic location and bring them closer to where ex-M EE T I N G T H E P S YC H OSO C I A L N EEDS O F C H I L D R EN L I V I N G W I T H H I V I N A F R I C A 3
  6. 6. capacity of community-based resource persons BOX 3. PROMISING PRACTICES: EARLY (e.g., adult volunteers living with HIV) or institu- IDENTIFICATION OF CHILDREN tions (e.g., faith-based groups) to screen for at-risk households and refer or accompany members of • Home-based HIV testing and counseling that household to a testing site. Finally, broader ef- • Use of child or adult in care as index client to for ts to build understanding of the impor tance of access other household members for testing early testing, promote services, and reduce HIV- and counseling related stigma are also critical to facilitating the • Provider-initiated testing through related identification of children. services (e.g., prevention of mother-to-child transmission, tuberculosis, palliative care, and immunization) Linkages between HIV testing and counseling ser- vices and subsequent, continuous care for those • Community volunteers identify households with children or adults exposed to HIV, who children (and families) identified as living with HIV are then referred for HIV testing are critical to ensure that children are not lost from • Outreach testing and counseling services, in- the system, especially as there may be breaks in cluding school-based programs time or physical distances between relevant ser- • Awareness building on pediatric testing and vices: “Children are referred to us from the hospital. counseling. Then a home-based carer visits the family to follow up and make sure the parent knows how to giveposed children may be. These include home-based BOX 4. PROGRAM EXAMPLE: IDENTIFICATIONvisits, school-based voluntary testing and counseling, OF CHILDRENand community outreaches (par ticularly in remote Program: Baylor Uganda, Kampalaareas). Background: Baylor provides comprehensive care and treatment for more than 5,000 childrenSeveral promising practices identified through the living with HIV and their families through clinictechnical reviews are very proactive in seeking out and home-based services, including counselingchildren potentially living with HIV, including house- and testing, clinical care and treatment, andto-house testing and counseling, and the use of psychosocial support.index clients (either adults/parents or children) to Promising Practices:access other family members—especially children— • Community volunteers screen householdswho might have been exposed to HIV (see Box 4). to identify children or adults exposed to HIV,These approaches have been par ticularly impor tant who are referred to the program for HIVin reaching exposed household members who oth- testingerwise would not have sought testing and follow- • Home care teams offer home-based testing,up services. In addition to being highly acceptable counseling, and follow-up(Were et al. 2006; Wolff et al. 2005), home-based • Family clinics provide care to index child pa-testing and counseling facilitates greater openness tients and their families, a channel for reachingand suppor t within the family and potential reduc- other children within the household who maytions in stigma more broadly (Lugada et al. 2010; be in need of services (or involved in sup-Nuwaha et al. 2009). Other approaches build the porting the child living with HIV).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. 7. the meds and when. This is when we are able to to initiate and sustain care. Parents and caregivers star t to see what other needs the children have” need manageable, consistent, and hopeful informa- (provider in South Africa). tion from the outset that can help them take some initial steps/decisions for the child’s well-being. This is As testing services are brought closer to children also an opportunity to identify any support that the and families, special attention must be given to en- parent/caregiver may need regarding his or her own sure that ethical considerations of proper consent, HIV situation, including provision of couples testing privacy, and confidentiality are correctly observed and counseling. as per country-specific guidance/policy. For the child, pre- and post-test counseling must Pre- and Post-test Counseling for Children be tailored to the appropriate development stage, and Parents/Caregivers which requires skill in being able to correctly assess Ensuring that quality pre- and post- test counseling is and adapt both the process and manner in which accessible as part of HIV testing services is critical to counseling is provided. For older, more mature chil- identifying and linking children to clinical and psycho- dren or adolescents, it is critical to engage with them social services as soon as possible. Discrete counsel- directly. Youth in both countries expressed their an- ing given specifically at the time of testing is distinct ger at being taken for testing without being told why from the ongoing counseling support provided for or given correct information before or after testing: children living with HIV and their families. However, “I was hurt. They did not tell me they were taking off even as a discrete activity, HIV testing and related the blood sample for HIV testing,” and “Doctors lied pre- and post-test counseling is a critical first step to to me. They gave it a funny name, told me it was ma- ensuring the longer-term care for the child; as such, laria. They gave my father the results, not me” (youth there are multiple individuals and levels of counseling in Uganda). Many of the programs reviewed dedicate involved, depending on the child’s age, developmen- specially trained child counselors for this initial coun- tal stage, disease presentation, and family situation. seling, which youth, parents, and caregivers found With young children under two years of age—or in helpful. Parents, caregivers, and children consistently the case of HIV testing of parents (e.g., mother dur- noted the need for additional information, counseling, ing PMTCT)—counseling is provided for the adult, and support following initial HIV diagnosis to help and full disclosure of the parent’s and child’s status them process emotions and develop care plans spe- to the parent is addressed during post-test counsel- cific to the needs and situation of the child. ing. In the case of older children (e.g., eight years or older, depending on developmental level and Field reviews highlighted several promising prac- national/program guidelines) and adolescents, pre- tices (see Box 5). Many HIV testing and counsel- and post-test counseling for the child must also be ing programs have adopted standard protocols for considered, including partial or full disclosure to the children (dependent on age and/or developmental child as appropriate. stage), including having time with both the child and the caregiver individually, as well as in a joint session. During field visits with programs in Uganda and Creating time for joint counseling was highlighted as South Africa, the importance of this initial counseling being a useful approach, allowing for the caregiver session at the time of testing was highlighted. Chil- and child to hear and share information together dren and their parents or caregivers have special, and with a trusted source, as well as providing an oppor- at times different, counseling needs that must be met tunity for the counselor to observe the interactionsM EE T I N G T H E P S YC H OSO C I A L N EEDS O F C H I L D R EN L I V I N G W I T H H I V I N A F R I C A 5
  8. 8. between caregiver and child. Some programs, par- BOX 5. PROMISING PRACTICES IN HIV TESTINGticularly those that did not offer testing and counsel- AND COUNSELING FOR CHILDRENing services, have counselors who can accompany achild and caregiver, providing a valued touchstone • Counselors, trained in child counseling, man-and friend throughout the testing process and then age testing and counseling process (andlink children and parents to follow-up PSS. follow-up care, if possible) • Provider accompanying child/caregiverSupporting the Disclosure Process to the through testing and counselingChild • Clear, standardized protocols (and tools) forSupporting the disclosure process is one of the bet- testing and counseling of caregiver and childter developed, documented, and resourced PSS ele-ments, particularly in terms of clinic-based services. • Inclusion of child in counseling, as appropriateAs noted previously, there are good guidelines and to age and developmental stage (per country or program guidelines)practices in place to guide how initial pre- and post-test counseling with parents/caregivers and the child • Individual sessions with parent/caregiver andshould be managed by trained providers. However, with child (as appropriate)things become less clear after the initial post-test • Joint sessions with parent/caregiver and childdiscussion, and supporting the continuous process of (as appropriate)disclosure—regarding both the child’s status, as well • Hopeful, consistent messaging (reinforced byas his or her parents’—is an important priority for all providers, including counselors, laboratoryPSS programs. staff, medical providers, etc.) • Manageable, critical information (not to over-The context of a child living with HIV adds complex- whelm with too much information)ity to how disclosure is managed. Disclosure of the • Immediate and continuous follow-up counsel-child’s HIV status to the parent or caregiver occurs ing.during post-test counseling. However, the timing andnature of disclosure to the child about his or herstatus is difficult to standardize and should, in fact, betailored to the child’s specific situation. Factors such testing and counseling, raise additional challenges inas development level, health condition, and home how pre- and post-test counseling are handled andsituation all impact the optimal disclosure process for how follow-up counseling should be structured forthe child, which may involve a long period of partial parents/caregivers and the children involved (poten-disclosure—where the child is given health and pre- tially including both HIV-positive and HIV-negativeventive information, but is not told that he or she children of varying ages/developmental stages, sib-has HIV—leading to full disclosure, when the child lings, extended family, etc.).is mature enough to understand the information. Inthe case of children, there are added complexities of Field reviews highlighted several promising practicesdisclosure about the parent’s status, as well as third- that respond to critical needs of parents, caregiv-party disclosure or informing other key caregivers ers, and children as they navigate the process of(e.g., family members, teachers, etc.) about the child’s disclosure (see Box 6). Input from parents/caregiversstatus. Expanded channels for testing that may in- during program technical reviews highlight the criti-volve multiple family members, such as home-based cal importance of the period immediately following6 A I D S TA R - O N E T E C H N I C A L B R I E F
  9. 9. the point when they, and sometimes the child, learn port the child” (provider in South Africa). Several of the child’s positive status. They noted that they providers noted that parents/caregivers often wait need continuous and varied follow-up; counseling too long to disclose to the child, to the point that and guidance to process the initial grief, guilt, and the child (or adolescent) is already aware of his or fear of an HIV-positive diagnosis; skills/information to her HIV status: “I don’t have a particular age that is talk with the child; and help to plan on behalf of a best for disclosure, but the earlier, the better. Our young child. This includes finding ways to incorporate kids are very bright and many will remind granny the opinions of children as they mature. Part of this about medicine time. But the grannies see it differ- forward planning also involves thinking through how, ently, for example one child is 14, but the granny when, why, and to whom to disclose (family mem- doesn’t want to disclose until he is 16. I am telling bers, friends, schools, community members, etc.), so her that the child knows already” (provider in South that they can also be engaged in providing continu- Africa). ous support for the child and increasingly involve the child in disclosure-related decisions. Programs in both Uganda and South Africa are us- ing several approaches to support disclosure and Helping parents/caregivers plan out when full disclo- strengthen parents and caregivers on this issue (see sure will happen is particularly important. Delayed Box 7). One important evolution is the shift away disclosure can impede the provision of additional from a single disclosure event to a more iterative services and support for the child: “Disclosure is a process of partial disclosure over time, where pro- huge problem and interferes with our ability to sup- viders share developmentally appropriate informa- tion about HIV that matches children’s illness experi- BOX 6. PROMISING PRACTICES IN SUPPORTING ences and development stage (Abadia-Barrero and DISCLOSURE TO CHILDREN LaRusso 2006). Studies suggest that this continuous approach of sharing information and gradually build- • Home-based ongoing counseling ing a child’s understanding of his or her illness helps to reduce some of the emotional distress of full dis- • Trained child counselor managing ongoing counseling of child and family closure and reinforces adherence to medical treat- ment (Abadia-Barrero and LaRusso 2006; Bikaako- • Counseling on partial and/or full disclosure Kajura et al. 2006; Brouwer et al. 2000; Mellins et al. tailored to developmental age and situation 2004; Williams et al. 2006). • Reinforcement of positive messaging • One-on-one skill building (e.g., role-playing Several programs in Uganda and South Africa use conversations on disclosure) this approach of partial disclosure, using the child’s • Peer support and mentoring own questions, level of comprehension, and health situation to guide the content and manner in which • Tools/approaches to facilitate disclosure (e.g., relevant information is imparted. As a provider in story books, play therapy) Uganda noted: “It’s not my decision whether or not • Facilitated communication (e.g., conducting to tell (the child), but if the parent asks, I advise par- joint counseling sessions with child and care- tial disclosure so that they can give the young child giver) information little by little.” Young people commented • Family conferences to assist with disclosure on the need for individualized disclosure processes and build support. based on what information the child can handle:M EE T I N G T H E P S YC H OSO C I A L N EEDS O F C H I L D R EN L I V I N G W I T H H I V I N A F R I C A 7
  10. 10. “You need to tell the character of the kid. Do you tell to parents/caregivers on disclosure; skill building him fast or slow? Do you hit him in the face with it via role-plays; facilitated disclosure where a trained and teach him later, or teach first, then hit him with provider is present during conversations with a child the truth?” (youth in Uganda). or with the larger family members; and developing disclosure plans that identify why, who, and whenGiven the central role of the parent/caregiver in sharing information about the child’s status may bedeciding what information will be shared with the helpful (e.g., creating opportunities to engage withchild and when, several promising approaches build peers living with HIV who have gone through similarparent/caregiver capacities to understand disclosure- experiences).related issues and how to communicate with theirchild. These include providing counseling support A number of programs have developed tools and approaches that are geared to the children, such as story books on disclosure. This gradual, tailored BOX 7. PROGRAM EXAMPLE: FACILITATING process creates an opportunity to reinforce positive DISCLOSURE messages and prepare the child for living positively once full disclosure happens. During focus group Program: The AIDS Support Organization (TASO), Masaka, Uganda discussions with young people, several raised the importance of having the opportunity to talk with Background: TASO’s approach to Living peers or adults living with HIV who have been Positively with AIDS is holistic and includes the through the experience of learning one’s status. One physical, psychological, and emotional well-being youth in Uganda noted: “Right after you should go of individuals living with HIV, including children. into peer support. Maybe it’s hard for you to talk Promising Practices: about, but so many people are talking so freely • A child counselor to oversee the child/family’s about it, you can talk.” This was echoed by another progress from testing through entire time in youth in Uganda who said, “I want to talk with some- the program one who has lived through it.” Youth and providers • Support includes joint counseling sessions alike emphasized the importance of positive, hope- with the child (age five and older) and care- ful messaging throughout all communications with a giver child and especially with full disclosure to the child. • Facility includes a play center where counsel- One provider in Uganda expressed this clearly: “We ors engage the child (via art, writing, general want to give them hope but a hope that is not false. play, etc.) to observe and assess (We tell them) ‘Even with HIV, you can become the • Interactive and tailored counseling approach person you want to become. But to do that you based on the child’s developmental stage and have to grow up.’” level of understanding (process of partial dis- closure) Addressing Internal and External Stigma • Community volunteers provide follow-up HIV-related stigma plays a critical, sometimes un- • A team facilitates ongoing conversations recognized, role in the overall well-being of children around disclosure between caregiver and living with HIV and their families. Stigma can as- child, and with larger family as needed sume many forms, including physical, social, verbal • Support during crises (e.g., inadvertent disclo- (language), and institutional discrimination, isolation, sure, and stigmatization). or abuse (Ogden and Nyblade 2005). Children and8 A I D S TA R - O N E T E C H N I C A L B R I E F
  11. 11. families affected by HIV face both external stigma— ate, as well as some of the promising practices being the negative attitudes and behaviors directed at used to overcome these issues (see Box 8). A sys- them from outside people or groups (e.g., com- tematic approach to understanding and addressing munity members, schools, extended family, etc.)—as both external and internal stigma can aid with disclo- well as internal or self-stigmatization—the degree to sure and enhance both demand and use of programs, which people living with HIV endorse the negative as well as the delivery of critical services. Several beliefs and feelings associated with HIV about them- promising practices emerging from the field-based selves (Stangl et al. 2009). Situations with children technical reviews are directed at addressing external can be complicated by a parent or caregiver’s own stigma, including aggressive community outreach that experience with internal stigma, which limit how he raises general awareness of HIV-related stigmas and or she is able to interact with and support the child. seeks to break down negative practices toward fami- Stigma can also push parents/caregivers to shield lies and children living with HIV. Others focus more their children: “Parents don’t tell (their children that deliberately on institutions for children, especially they are living with HIV) because they’re protect- schools and churches. Programs in both countries ing their children. Children can be cruel and parents respond to specific situations where stigma impacted don’t want people to be mean to their children” a child client: “We have had problems with teachers (provider in South Africa). For vulnerable girls and boys in HIV-affected com- BOX 8. PROMISING PRACTICES IN ADDRESSING munities, including children who are living with HIV, STIGMA multiple forms of stigma may affect their ability • Community outreach to raise awareness and willingness to participate in and benefit from about HIV, to increase understanding of stig- programs. In addition to some of the more general ma and its impact, and to address stigma stigmas associated with gender or HIV, these children • Targeted interventions to address negative also face internal and external stigma around being stigma (e.g., in schools) labeled “vulnerable” or “orphaned,” as well as being • Peer outreach and support, especially by poor. The affect of these stigmas is interrelated, with youth living with HIV (e.g., through testimo- HIV-related stigma often being the most directly nies) feared or experienced. Such stigmas can be manifest- • Mentoring (e.g., older youth with younger ed in many ways, from increased risk behaviors, to child; via adult role models) and advocates to caregiver reluctance to access services and disclose support children status/information, to family and community neglect • Support groups (for children, youth, caregiv- of the child, to isolation and depression experienced ers) by the child and/or caregiver. PSS efforts to help children cope with harmful effects of feared and real • Informal interactions between both HIV-posi- stigma are critical to their well-being. As one youth tive and HIV-negative children in Uganda noted: “Children need a constant loving • One-on-one counseling presence because they can often be isolated from • Consistent, positive messaging about HIV and others because of stigma.” living with HIV • Tools/approaches (e.g., life skills, and REPSSI’s Current programs for children living with HIV con- Hero Books). sistently highlighted the barriers that stigma can cre-M EE T I N G T H E P S YC H OSO C I A L N EEDS O F C H I L D R EN L I V I N G W I T H H I V I N A F R I C A 9
  12. 12. ostracizing our children in school, so we go to the to the child), so that they are then able to provideschools and engage with the teachers” (provider in positive support for the child.South Africa). An important aspect across programsis the engagement of adolescents and adults living Children living with HIV need opportunities to en-with HIV to lead these efforts via awareness cam- gage with children who are HIV-negative, althoughpaigns with model clients (e.g., adults living with HIV programs should be prepared to prevent or handlewho have been identified and prepared to share situations of inadvertent disclosure and ensure thattheir experiences in living positively with others) and HIV-specific needs/considerations are not lost. Somerole models, drama outreaches led by HIV-positive programs noted that activities such as community-youth groups, and peer outreach in schools (e.g., based drug distribution centers may help reduceadolescents living with HIV visit neighboring schools stigma by encouraging clients to access these servic-to share their experiences and promote the rights of es openly and more conveniently; these actions canthose living with HIV). then be seen as routine by others in the community. However, providers, caregivers, and children also not-Support groups and individualized counseling are ed that being part of a program clearly associatedcritical approaches for helping children process dif- with HIV (e.g., people know that a particular clinicficult feelings and experiences, as well as build skills or provider focuses on HIV-related care) or hav-to fend off internalized stigma: “My counselor helped ing labels (e.g., on uniforms, hats, vehicles, etc.) canme see that whatever they said, I had the power to foster stigma or increase client perceptions of beingtake it in or not, let it affect my life or not” (youth stigmatized. These highlight how even small thingsin Uganda). Programs also highlighted having consis- can unintentionally reinforce negative and harmful at-tent, positive messaging on HIV (e.g., that it is not a titudes or, alternatively, facilitate greater understand-death sentence, that children can lead normal lives ing and support for people living with HIV; programsand should plan for their future) as being crucial to need to create time and space for exploring stigmaensuring a confident, hopeful child; such messaging (at different levels and settings) and build individualshould be reinforced by all influential individuals in and community capacities to prevent, manage, andthe child’s immediate sphere. Providers noted the reduce stigma.importance of communication, physical contact, andsocial interaction with peers, family members, and Preparing for and Coping with Loss, Grief,resource persons to work through some of the dif- and Bereavementficult feelings and isolation a child may be experienc- Loss is often an inherent part of any child’s life, buting: “So many kids don’t have anyone to talk to at it has increased importance for children born andhome. They are alone. We want to support these living with HIV. This research effort focused on thekids. We want to see happy children” (provider in grief experience of children born and living withSouth Africa). Tools like Hero Books (REPSSI 2007) HIV. For these children, especially those living in highallow creative and confidential ways for children to HIV-prevalence communities, there can be multipleexpress what they are going through and process forms of loss, from the death of parents, siblings, andthe feelings of guilt, shame, and grief associated with friends, to having an unstable home environmentinternalized stigmas. An important point to mention (e.g., moving from one household to another, andis that parents, caregivers, and providers need sup- loss of income), to perceived or real lack of oppor-port in addressing their fears and guilt (both for their tunities (e.g., unable to play freely, and lack of senseown situation if HIV-positive, as well as with regards of future or purpose; Steele, Nelson, and Cole 2007).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. 13. Studies show that children are particularly affected propriate approaches to helping a child process in the year before experiencing the death of a par- grief. Providers noted that this is due, in par t, to their ent, highlighting the importance of interventions own limited capacity and time to support children that help a child and his or her parents/caregivers through grief; as one provider in Uganda said, “There prepare for this loss, as well as cope with the subse- is a lot more for me to learn. I learned how to deal quent grief (Christ 2000). with children’s grief and bereavement by doing it, but I don’t always know what to say.” Grief and bereavement was an underaddressed area for several programs included in the field review, Despite these limitations, some programs did have although some are making important strides in this several promising activities to address grief and be- area (see Box 9). Providers noted that they often reavement (see Box 10). This includes preparing for come up against cultural or caregiver reluctance to an impending death of a parent, including develop- talk openly about death and loss with children: “We ing succession or ongoing care plans for children; have many kids who don’t want to talk about loss. writing wills; and preparing memory boxes, books, The cultural situation is that children are not part of family trees and other materials—often jointly with death. The idea is that children don’t know anything, so they don’t need to know. Children don’t even go BOX 10. PROGRAM EXAMPLE: HELPING to the graveside. They don’t have closure” (provider CHILDREN COPE WITH GRIEF AND LOSS in South Africa). While programs often had specific activities to support children through a loss or the Program: St. Nicholas Bana-Pele Network, Free impending death of a parent, few had a continuous State, South Africa and individualized approach that incorporates estab- lished best practice on age/developmental stage–ap- Background: Bana Pele focuses on providing palliative care for children with life-threatening conditions, including HIV. It provides BOX 9. PROMISING PRACTICES IN ADDRESSING psychological, spiritual, and clinical care through GRIEF AND BEREAVEMENT daycare centers, home-based activities, and hospice care. • Continuous screening and counseling for chil- dren and caregivers Promising Practices: • Prioritized support for acute situations (for • Strong emphasis on giving children opportuni- child or caregiver/household) ties to learn and talk about illness, death, and dying (if losing a loved one is imminent) • Targeted activities to prepare for the death of a parent/caregiver, including succession plan- • Specific workbook Growing through Grief for ning, will writing, memory boxes/books, geno- older children grams and family trees, etc. • Forums for children to interact and share, in- • Activities/tools to use with the child to pro- cluding daycare, support groups, play therapy, cess loss and grief and theater groups • Tools for building memories and facilitating • Contact throughout the death of a loved one communication (e.g., memory boxes) (e.g., attend funeral, and home visit) • Support for adults through their own grief via • Referrals for ongoing support, such as in- counseling, genograms that map out family come-generating activities, social welfare. relationships, and medical histories.M E E T I N G T H E P S Y C H O S O C I A L N E E D S O F C H I L D R E N L I V I N G W I T H H I V I N A F R I C A 11
  14. 14. the child, helping to facilitate communication—that BOX 11. FAMILY-BASED APPROACHEShelp provide important family contexts, histories, andmemories for the child to draw on going forward. While there is global recognition of theEven simple steps, such as attending the funeral or importance of family-based models of HIV-making a phone call after a death, can be an impor- related care and support (Richter et al. 2009),tant form of support for a child or caregiver expe- programs have yet to fully adopt this approach.riencing loss, reinforcing a sense of connection and A few of the programs reviewed for this briefsupport to others. have initiated some family-focused activities, such as home-based testing (accessing the family via an adult or child index client); family conferencesStructuring the Provision of Psychosocial to address critical situations regarding theSupport child’s physical, psychological, and social status;PSS is important for all programs that provide treat- and support to facilitate disclosure within thement, care, and support for children living with HIV family. Youth and caregivers were positive aboutand their families, including those that focus on clini- such steps, noting that they helped to opencal management of pediatric HIV (e.g., ART programs, up discussion within the home, especially withand palliative care programs) and others that priori- critical groups that might otherwise not be engaged, like siblings.tize support for orphans and vulnerable children. Theshift toward a continuum of care approach, as well asa more family-oriented system of care, have createdopportunities for dedicating greater attention andresources for PSS (see Box 11). BOX 12. PROGRAM EXAMPLE: ENSURING CONTINUOUS AND APPROPRIATE PSSDespite the challenges of operating in high HIVprevalence and resource-constrained settings, pro- Program: National Association of Child Caregrams in South Africa and Uganda are incorporating Workers (NACCW), Eastern Cape, South Africapromising practices within the way they structure Background: NACCW’s Isibindi programand deliver PSS services (see Box 12). Many of these engages a variety of providers and volunteers tocenter on resource extension that maximizes ef- provide ongoing support for children living withficient use of the time, staff, and funds available for HIV and families (among others). Isibindi’s CirclesPSS. Some of these promising practices include: of Care model trains community members to support families along with program providers.• Addressing basic household needs. Programs have broadened their activities to reflect the realities Promising Practices: of the children and families they serve. In addition • Program invests in and engages a range of to psychological care, programs may provide (or providers, including those based in the com- munity refer to other programs that provide) support for legal services (e.g., will writing, and succession • A primary provider is responsible for con- planning) and access to education (e.g., financial ducting ongoing assessments of the child’s status and family situation support and scholarships). Several programs re- ported that they form close linkages with other • Care plans are developed for each family de- pending on specific needs and circumstances; groups in the community (e.g., child protection plans are adjusted based on assessments. agencies, social welfare groups, income-generating12 A I D S TA R - O N E T E C H N I C A L B R I E F
  15. 15. activities, etc.) to ensure that children and their ent/caregiver) from partial to full disclosure. As- families are part of the broader network support- sessment practices include having initial in-depth ing their welfare. psychological and social assessments by trained providers and/or multidisciplinary teams (e.g., But- • Expanding the continuum of carers. All programs terfly House’s Team Around the Child); developing that were interviewed in South Africa and Uganda a central, tailored care plan for each child based work with a range of counselors (general, child, on his or her identified needs, disease presenta- and adherence), clinical providers, therapists, social tion, and home circumstances; providing ongoing workers, home-based care teams, community vol- PSS assessments by trained personnel; and home- unteers, and model patients to provide clinical and based interactions (e.g., by volunteers, adherence PSS services and monitor the well-being of the counselors, etc.). Such practices also help program child and family. While this can add to challenges staff and providers prioritize children with acute of maintaining clear roles, strong internal and ex- mental health needs and allow for a more rational ternal referrals, capacity building, quality control, and fair allocation of scarce resources. and supervision, having more resource persons available—especially those who can be accessed • Creating a friendly environment for the child. Many in the community or through home visits—is programs are finding small and large ways of mak- valued by the families of children living with HIV. ing services and facilities more child-friendly and In addition, this approach can bring cost savings, child-oriented. This includes having cheerful play as programs can decentralize basic services and areas with toys, activities such as drawing and let- make more efficient use of highly trained provid- ter writing for children to relax or interact with ers. other children, and, in some cases, also providing an opportunity to be observed by counselors or • Identifying a primary case manager. Some programs to engage with a play therapist. Volunteers (e.g., coordinate care of the child through one main “play aunties”) who interact with children in both provider (e.g., a child counselor) who manages clinic and community settings can provide a fa- the client (and family) from his or her entry to miliar and comforting link for children. Programs the program; facilitates referrals to other program, use everything from colorful aprons to videos in partner, or community resources; conducts regu- waiting areas to create a welcoming environment. lar assessments of the child’s psychosocial status; Several programs provide snacks for children dur- adapts and maintains a central care plan and file; ing long clinic days, something that is par ticularly and serves as the primary contact person for appreciated by caregivers and the children them- caregivers, family and community members, and selves. other providers interested in supporting the child. • Providing continuous assessment of PSS needs and PERSISTENT CHALLENGES responses. Programs are finding ways to ensure that children are continuously assessed for their psychological and social status and that ongoing support is adjusted accordingly as the child ma- D espite the efforts of these and other PSS pro- grams, there are some persistent gaps and chal- lenges in providing individualized, continuous, quality tures. A good example of this is in monitoring dis- support for children living with HIV and their families. closure and facilitating the transition (with the par- The following issues are overarching considerationsM E E T I N G T H E P S Y C H O S O C I A L N E E D S O F C H I L D R E N L I V I N G W I T H H I V I N A F R I C A 13
  16. 16. that impact provision and uptake of the range of ser- program-based orientations typically do not ad-vices and promising practices noted in the previous dress the expressed needs of children—especiallysection: adolescents—who are looking for peer- and youth- led initiatives that complement the support given• Psychosocial support needs to be tailored to the by well-informed providers. Parents and caregivers specific situation of the child (based on develop- also voiced a similar need to build their own skills ment stage, disease presentation, and home/family and abilities to care for their children. Programs, circumstances) and adapted over time as the child providers, caregivers/parents, and children lack op- matures and his or her needs evolve. Programs are portunities and channels to learn from one another, challenged to develop approaches, activities, and whether through peer support groups at a village human resources that have the capacity to address level or the sharing of tools/curriculum between immediate PSS needs, while also helping a child and programs. his or her family prepare for the future. The need for a flexible and long-term approach affects both • Efforts have limited engagement with younger content of PSS activities (e.g., having a program children, particularly in the four- to eight-year-old that gradually builds critical understanding and life range. These are critical years in early childhood skills to address emerging sexual and reproduc- development, and more could be done to system- tive health questions/needs), as well as the way in atically work with young children and caregivers to which services are provided (e.g., engaging more build resilience and form positive behaviors/atti- directly with older children and adolescents in their tudes in how they learn to manage their own physi- own care, in preparation to transition to adult pro- cal, psychological, and social well-being. grams). • Most programs focus on a single caregiver, often fe-• Program- and household-level resource constraints male (given the generally limited engagement of or and general poverty directly impact the psycho- by male caregivers) and elderly, who often has PSS logical and social well-being of children, as well and other needs of his or her own. While some as restrict if and how services are offered and programs try to broaden the number of people utilized. When time, person power, and funds are caring for a child and provide some support, gener- limited, other issues (e.g., basic needs, and clinical ally the burden of care still falls on one person who treatment) take priority. Even within South African may be struggling to meet his or her own needs, as households that receive child care grants, basic well as care for the child. needs were cited as the primary concern.• PSS efforts remain heavily driven by and dependent RECOMMENDATIONS on clinic- or program-based providers and activities, with some decentralization to the community level via social workers, adherence counselors, home- based care teams, volunteers, etc. When programs A s current programming efforts in South Af- rica and Uganda illustrate, there are promising practices that can be adapted to enhance the psy- give limited attention to building the skills and agen- chological and social well-being of children aged 0 cy of children and caregivers to meet their own to 12 years living with HIV. Recognizing that parents, PSS needs, efforts are highly vulnerable to shifts in caregivers, providers, and program staff are often program staffing, funding, and support. Facility- and overburdened and under-resourced and public health14 A I D S TA R - O N E T E C H N I C A L B R I E F
  17. 17. planners and implementers have limited resources, • Identify and address concerns related to the par- the following recommendations may help programs ent/caregiver that may have an impact on the prioritize specific areas for greater attention and child’s care (e.g., couples testing and counseling). maximize available resources to effectively support children living with HIV and their families. Even if • Provide frequent post-test follow-up through home programs cannot take on each recommendation in visits with the child and his or her primary caregiver, full, some of the subrecommendations may be man- using a range of resource persons such as child ageable and effective in strengthening current efforts. counselors, community-based volunteers, HIV-mod- Many of these recommendations should not require el patients, etc. significant resources to implement, especially those that emphasize the role of caregivers, parents, com- • Facilitate discussions, counseling, and skill-building munity members, and/or children and adolescents in within the family/household to broaden the net- programming. Where staffing, technical capacity, time, work of available caregivers. and financial resources are limited, programs can con- centrate efforts on a few initiatives that have repeat- Expand the continuum of carers to include edly emerged through this research as priority areas more community-based resource persons and for greater PSS. partners to meet the PSS needs of children while maintaining a central point person to Dedicate trained personnel and project re- monitor and coordinate care. sources to work with the child, caregiver, and Programs are strengthened by having multiple types of family in the period immediately following complementary providers and volunteers responding testing and disclosure of results. to children’s needs closer to home. Key approaches Parents and caregivers identified the time after HIV include: testing as being critical to their own psychosocial well- being and to effective planning for care of the child. • Extend trained resource persons (especially youth This is also an important stage to build support and and adults living with HIV) to interact with children, prevent/address stigma within the household. Avail- caregivers, and families in their homes and villages able resources could be used to maximize this win- to ensure more timely and frequent access to care dow of opportunity: (e.g., via home-based care visits, outreach, commu- nity drug distribution centers, resident volunteers • Prepare all cadres of providers for these important and expert patients, etc.). initial conversations by strengthening their skills and capacity in child and family counseling and commu- • Move support activities from clinics or program nication. centers into the community (e.g., having peer sup- port groups for children and caregivers at the vil- • Work with the family to develop a care plan that lage level). includes appropriate disclosures to others, clinical treatment and adherence, psychosocial well-being • Link caregivers and families (and adolescents/youth, and support (including ensuring access to educa- as appropriate) with partner organizations to in- tion, social interactions, etc.), succession planning crease access to a variety of critical resources and (as relevant), and other services/referrals to assist support (e.g., food gardens, livelihood training and with the family situation. support, home construction, financial resources,M E E T I N G T H E P S Y C H O S O C I A L N E E D S O F C H I L D R E N L I V I N G W I T H H I V I N A F R I C A 15
  18. 18. etc.) and reduce the burden on any one program. BOX 13. EQUIPPING PROVIDERS, PARENTS, Several programs work very closely with local government and community structures/groups to AND CAREGIVERS address acute situations (e.g., situations of abuse or Building skills and understanding: violence against the child, and incidents of stigmati- zation in schools). • Trainings and workshops (linked to clinic days) on HIV information, parenting, and communication skills• Enhance understanding and capacity of key govern- • One-on-one skill building (e.g. role-playing ment and community structures to foster sustained conversations on disclosure) PSS, as possible. In particular, this includes the school system, child protection and law enforce- • Facilitated communication (e.g., conducting joint counseling sessions with child and ment agencies, and local government. caregiver) • Family conferences to assist with disclosure• Maintain clear roles and reporting lines to a central and build support. resource person who can monitor the child’s case, adjust care plans, provide supervision, and ensure Creating channels and forums for peer privacy/confidentiality for children and caregivers. support: • Separate peer support groups for children andInvest in building the capacity of caregivers caregivers, including those that focus on griefand children and create forums for them to and bereavementmeet their own PSS needs and support oth- • Outreach and role modeling by adults anders. youth living with HIV.By building capacity and by supporting forums forchildren, parents, and caregivers to support each other, Meeting caregiver needs:programs can encourage a more responsive, sustain- • Counseling support for own disclosure, grief,able model for basic PSS. Approaches include: and bereavement • Support and referrals to meet basic needs,• Build the capacity of parents and primary caregiv- including linkages to income-generating activi- ers (see Box 13). Given the importance of the ties. primary caregiver, emphasis should be placed on developing simple forms of support (improved listening and communication, opportunities for play, etc.) that happen within the home. Capacity build- to manage stigma). They needed more time with ing and skills transfer (and role modeling) can be professional, well-informed resource persons who integrated simply and inexpensively into all interac- could provide them with accurate and complete in- tions between trained providers and caregivers. formation and guide them in making good decisions.• Facilitate skills development of all children living • Cultivate ability of older children, adolescents, and with HIV to manage their own care. Youth particu- youth living with HIV to provide peer support and larly expressed the need to be better prepared to serve as resources. Youth repeatedly noted the manage their own situation (e.g., knowing when, need for peer support, particularly for younger chil- who to, and how to disclose to others, and how dren, and appreciated both structured and informal16 A I D S TA R - O N E T E C H N I C A L B R I E F
  19. 19. opportunities for interacting with other children liv- • Analyze programs for any elements that promote ing with HIV (e.g., during clinic days, support groups, positive images of people living with HIV (e.g., peer camps, etc). In particular, they stressed the impor- role-modeling programs, and community drug dis- tance of peer support and youth-led forums/activi- tribution centers) or inadvertently reinforce nega- ties that allow them to share information and coun- tive stereotypes. sel and guide one another; older youth repeatedly saw an opportunity to help younger children adjust • Integrate stigma-reduction activities into trainings and live positively with HIV. A more deliberate ef- and meetings with program staff, including those fort during the initial stages of HIV care may help working largely in the community. build a set of resources around a young person that will provide ongoing support and help children • Build skills of child counselors and providers to ad- build resilience and capacities to manage their psy- dress stigma throughout screening/assessments (e.g., chological and social well-being in the future. care plans) and ongoing counseling of children and parents/caregivers. • Create and support structured and unstructured forums for children living with HIV and their par- • Develop skills and opportunities for community- ents or caregivers to interact with peers, provid- based resource persons—especially youth and ing an important opportunity for people to meet, adults living with HIV—to interact with children share experiences, and learn from one another. and household members and address stigma. These need not be resource-intensive and could benefit from being decentralized from a program/ • Support targeted interventions to address negative clinic setting to being brought into the community situations in schools and general communities. and led by young people or caregivers. Interactive sessions might simply bring children together to • Facilitate peer outreach, mentoring, and support play (with adult supervision) or could be formed groups for children and youth living with HIV. around specific issues/activities of interest (with some technical resource or facilitation, as needed). Forums could be led by experienced youth or RESOURCES caregivers, or by trained community resources (e.g., community volunteers, model adults living with HIV, REPSSI ( etc.). • Psychosocial Support Advocacy Toolkit • Mainstreaming Psychosocial Care and Support With- Reduce stigma within the immediate cir- in Paediatric HIV and AIDS Treatment cles of care such as households, clinics, and • Mainstreaming Psychosocial Care and Support schools. Through Child Participation Given the pervasiveness of harmful attitudes and influ- • Mainstreaming Psychosocial Care and Support: Train- ences in households, schools, and communities where er’s Guide for Training Health Workers children living with HIV reside, it is important that all • Making a Hero (Active Citizen) Book: A Guide for people and programs involved in providing HIV-relat- Facilitators ed services address stigma while building the capacity • Hero Book Anthology: A Collection of Hero Stories of individuals and families to address stigma directly. from Southern Africa Approaches include: • Digital Hero Book ToolkitM E E T I N G T H E P S Y C H O S O C I A L N E E D S O F C H I L D R E N L I V I N G W I T H H I V I N A F R I C A 17
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