International Youth Leadership Summit & Expert Transition Conference by Catholic Relief Services

International Youth Leadership SUMMIT & Expert Transition Conference

September 16, 2010 Division of Adolescent and Young Adult Medicine, Department of Pediatrics, University of Maryland Catholic Relief Services Childrenâ&#x20AC;&#x2122;s National Medical Center Baltimore, MD, USA

Since 1943, Catholic Relief Services (CRS) has held the privilege of serving the poor and disadvantaged overseas. Without regard to race, creed or nationality, CRS provides emergency relief in the wake of natural and man-made disasters. Through development projects in fields such as education, peace and justice, agriculture, microfinance, health, HIV and AIDS, CRS works to uphold human dignity and promote better standards of living. CRS also works throughout the United States to expand the knowledge and action of Catholics and others interested in issues of international peace and justice. Our programs and resources respond to the U.S. Bishopsâ&#x20AC;&#x2122; call to live in solidarity-as one human family-across borders, over oceans, and through differences in language, culture and economic condition. Catholic Relief Services 228 West Lexington Street Baltimore, MD 21201-3413 USA Written by: Brenda Schuster HIV Unit, Program Quality Support Department Catholic Relief Services All Photos: David Snyder for CRS ÂŠCopyright 2010 Catholic Relief Services

International Youth Leadership SUMMIT & Expert Transition Conference REPORT September 16, 2010 Division of Adolescent and Young Adult Medicine, Department of Pediatrics, University of Maryland Catholic Relief Services Childrenâ&#x20AC;&#x2122;s National Medical Center Baltimore, MD, USA

TABLE OF Contents

acknowlegements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . V

ACRONYMS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . VI

Executive summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 International Youth Leadership SUMMIT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Objective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Discussion topics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Discussion outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Leadership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Psychosocial support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Transitioning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Summary of key youth recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Expert Conference on Transition Program Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Objective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Framing the Discussion about Transition Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Discussion topics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Discussion outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Barriers to transition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Psychosocial factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Health policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Summary of key recommendations from experts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Next Steps . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Appendix A: Agenda for International Youth Leadership Summit . . . . . . . . . . . . . . . . . . . . . . . 14 Appendix B: Agenda for Expert Conference on Transition Program Planning . . . . . . . . . . . . . 15 Appendix C: Expert Participant List . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Appendix D: Presentations from Expert Conference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Dorrett Byrd, CRS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Vicki Tepper, IHV, University of Maryland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Gretchen Bachman, United States Agency for International Development (USAID) . . . . . . 22 Dr. Mychelle Farmer, CRS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Dr. Adetayo Banjo, CRS Nigeria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Alice Moyo, CRS Zimbabwe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Irene Atuhairwe, CRS Uganda . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Khadija Karama, CRS Kenya . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

acknowlegements Catholic Relief Services would like to acknowledge the many individuals and organizations whose invaluable contributions led not only to the successful joint conference on youth leadership and transition that was held on September 16, 2010, but to this final report. For their hard work organizing and supporting the conference: Catholic Relief Services: Sean Callahan, Dorrett Byrd, Shannon Senefeld, Mychelle Farmer, Mary Riddick, Renee Murray, Carrie Miller, Adele Clark, Caroline Bishop, Nathalie Piraino, Brenda Schuster Division of Adolescent and Young Adult Medicine, Department of Pediatrics, University of Maryland: Ligia Peralta, Sara Clayton, Jay A. Perman, Kate Sharoky, Nadia Ashai, Katy Still, Archana Srinivas Childrenâ&#x20AC;&#x2122;s National Medical Center: Connie Trexler For their excellent presentations and guidance throughout the conference: Youth participants from the USA, Norah Matyama (Uganda), Tichaona Mudhobi (Zimbabwe), Abel Adole (Nigeria), Sean Callahan (CRS), Dorrett Byrd (CRS), Vicki Tepper (IHV, UMD), Gretchen Bachman (USAID), Khadija Karama (CRS Kenya), Irene Atuhairwe (CRS Uganda), Alice Moyo (CRS Zimbabwe), Adetayo Banjo (CRS Nigeria), Mychelle Farmer (CRS) For their thoughtful inputs into and reviews of this report: The HIV Unit of the CRS Program Quality and Support Department: Mychelle Farmer, Caroline Bishop, Carrie Miller, Adele Clark, Shannon Senefeld, Kristin Weinhauer â&#x20AC;&#x192;

ACRONYMS

AAP

American Academy of Pediatrics

CRS

Catholic Relief Services

HIV

Human Immunodeficiency Virus

HRSA

Health Resources and Services Administration

IHV

Institute of Human Virology

NIH

National Institutes of Health

OVC

Orphans and Vulnerable Children

PLHIV

People Living with HIV

Q&A

Question and Answer

SAHM

Society of Adolescent Health and Medicine

UMD

University of Maryland

USAID

United States Agency for International Development

VAYA

Vulnerable Adolescents and Young Adults

Executive summary Twenty-two young people (aged 18-24) living with or affected by HIV and representing eight U.S. cities and three African countries met on September 16, 2010 at the University of Maryland in Baltimore to discuss their experiences, share best practices, generate a set of recommendations regarding adolescent HIV program development and share those recommendations with key decision makers. During the morning session, youth participants discussed: 1. Youth leadership; 2. Psychosocial support; 3. The use of technology in HIV care, and 4. Issues of transitioning from pediatric/adolescent to adult care. Simultaneously, 26 experts in HIV and adolescent health met at Catholic Relief Services Headquarters to discuss ways to transition children through adolescent care and into adult HIV care and treatment services. Participants broke into three groups to discuss: 1. What are the barriers to successful transition? 2. What is the influence of psycho-social and socio-cultural factors on transition planning? 3. What are existing health policies and policy gaps in transition planning? During the afternoon session, youth and experts convened for a large group discussion. Youth answered experts’ questions and presented their ideas on: • Ways to encourage youth involvement in HIV care • Elements of good psychosocial care • Potential applications of technology in HIV care • Transition challenges • Outline of good transition care Key recommendations from youth: • Implement a ‘Youth-to-Youth’ approach to HIV treatment, care and support. • Design a one-year transition program to support the shift from pediatric/adolescent to adult care. • Empower adolescents to take the lead in their own care by implementing online personal case management and training youth in advocacy skills. • Make service providers accountable for their quality of care. • Continue investing in psychosocial support for all ages, including peer support groups. • Work with clinics to make their atmosphere less stigmatizing and more welcoming.

Key recommendations from experts: • Create a culturally-sensitive evidence-based framework for transition planning and implementation tools for transition programs. • Put youth at the center of program planning and implementation and provide mentorship throughout the transition process. • Integrate non-healthcare support into transition planning in order to create holistic programs. • Make transition programming sustainable by seeking multisectoral support and policy support and linking transition activities to clear funding lines in OVC or other relevant programs.

International Youth Leadership SUMMIT O b j e c t iv e To bring together adolescent leaders from HIV-affected populations to discuss their experiences, share best practices, generate a set of recommendations regarding adolescent HIV program development, particularly transition issues, and share those recommendations with key decision makers (including policy makers, donors, program managers and academics).

Par t icipan t s Twenty-two young people (aged 18-24) living with or affected by HIV participated in the forum. Eight U.S. cities and three African countries were represented, among them: • Baltimore • Washington D.C. • Chicago • Tampa • Miami • New York City • New Orleans • Philadelphia

Youth leaders raise their concerns in small group sessions. David Snyder for CRS

• Kampala (Uganda) • Abuja (Nigeria) • Bulawayo (Zimbabwe)

D iscussion t opics With support from medical student facilitators, participants were divided into four groups of 5-6 youths and asked to discuss the following (see Appendix 1 for complete program agenda): 1. Leadership: How are adolescent People Living with HIV (PLHIV) taking the lead and how can others be encouraged to lead/participate in HIV program development? 2. Psychosocial support: What are adolescent PLHIV’s psychosocial needs? What is working and where are the gaps? How can support be more effective and more youth-led? 3. Technology: How is technology being used in adolescent PLHIV care and what are further possibilities for its use? How can technological networking between young patients and care providers be improved? 4. Transitioning to adult care: How would adolescent PLHIV like to see the transition from pediatric/adolescent to adult care, treatment and support happen?

D iscussion ou t com e s After discussing in small groups (5-6 people), participants presented their ideas to the whole group and then discussed as one body. The results of this final discussion were shared with key decision makers (including policy makers, donors, program managers and academics) in a presentation/Q&A session.

“To me, leadership is essentially three things: integrity, character and accountability.” - Youth participant

L e ad e rship Youth participants recommended that programs integrate a ‘Youth-to-Youth’ approach to HIV care, treatment and support. When young people leave pediatric/adolescent care and enter adult care they should be paired with a mentor for one year. Ideally, that mentor should be another youth who is familiar with the system and can support the youth to negotiate the adult care system, advocate for his or her rights and needs and manage psychosocial challenges. If applicable, the mentor should be paired with the youth from the time the youth’s HIV status is disclosed to him or her. Youth emphasized the need for adolescent PLHIV to have positive role models. These role models need to show youth, through their own life example, that: • HIV does not diminish one’s inherent value as a person. • HIV does not need to limit one’s life. PLHIV have the same chance as everyone else to achieve their dreams.

P sychosocial suppor t Summit participants discussed the importance of adequate psychosocial support and brainstormed ways to make support more effective. Their key recommendations are as follows: • Good energy/attitude – Clinic atmosphere should be “bubbly” and “feel like home.” Staff should be welcoming and friendly. • Transport costs – Support groups should consider bus cards or other financial support to ensure that adolescents can attend meetings. • Build relationships – Service providers should prioritize building a strong, caring and trusting relationship with their clients. Youth need an opportunity to ask questions and Youth leaders discuss the outcomes of their group discussions. David Snyder for CRS

raise concerns. They need service providers to take the time to ask them about their lives, explain about HIV and related topics, keep them apprised of their health status, and intervene when youth are having special challenges. • Recreation/retreats – Peer support groups should do fun things together outside of a meeting room. This will help participants reduce stress, build lasting friendships and interact in different social venues. • Individual therapy – Youth need private counseling sessions in addition to peer support groups. • Education/classes – Youth need support, referrals and encouragement to seek out training and education opportunities. Participants also suggested that clinics consider behavior management classes. These peer-led classes would teach young PLHIV how to accept their status and manage their lives without acting out in negative ways. • Peer leader/mentor – Adolescents need a peer leader to provide them with targeted psychosocial support, help them access information and refer them to services. This mentor should practice behavior modeling.

• Information to caregivers/family – HIV programs need to ensure that families and caregivers are receiving complete and accurate information about HIV prevention, care, treatment and support. This information (and counseling, if necessary) will serve to prevent families/caregivers from stigmatizing young PLHIV and will sensitize them to PLHIV’s psychosocial and other needs. Youth participants also raised the issue of separate HIV clinics leading to social stigma. Having stand-alone HIV services or reserving an entire floor/section of a clinic for HIV/STI care makes adolescents uncomfortable. Also, adolescent PLHIV reported they are less likely to access services when they are mixed together with key populations at higher risk (such as drug users).

T e chnology Small and large group discussions raised a number of ways in which technology is and can be used to improve HIV service provision. Regarding adherence, participants discussed – with varying degrees of interest and support – clinic-based programs that send SMS messages to clients to remind them to take their medication. Some service providers even require clients to take a cell phone photo or video to prove they have taken their medicine – a measure that participants thought could be helpful in some cases but intrusive in many. Youth participants were most interested in the idea of online management of their HIV care. Their vision is for a ‘one-stop’ site that will give them access to their lab test results, medical history and medical appointments, and allow them to schedule appointments,

Youth leaders share their concerns and recommendations with

pay bills and manage their health insurance information.

industry experts. David Snyder for CRS

Transi t ioning Forum participants discussed transition issues at length. They reported that adolescent adherence and health-seeking behaviors decrease dramatically when transition is poorly managed. Top complaints included: • Burden of suddenly having complete responsibility for making and keeping appointments and remembering to take medication • Impersonal/unengaged doctors and clinic staff • Lack of peer support and mentors • Multiple service providers at multiple locations • Hassle of managing paperwork and health insurance details • Lack of counseling diversity • Lack of HIV knowledge and advocacy skills among HIV-positive adolescents • Weak psychosocial support system Participants agreed that a one-year transitional care program is necessary to keep adolescents from falling through the cracks and to ensure their adherence and personal growth. This program must include a peer mentor and advocate that works with the youth to manage his or her health and provide psychosocial support. 5

Finally, participants emphasized the need for more supportive adult HIV services. They reported that: • A diversity of services is needed to support a diverse clientele. Young people need to be encouraged to ‘shop around’ to find the clinic and support group that best suits their needs. Clinics should try to have counselors from different age and ethnic backgrounds. • A doctor who takes the initiative is essential. Young people need a doctor who establishes a personal connection, demonstrates care and interest and recognizes the effort clients make to manage their care and treatment. Doctors must disclose pertinent health and other information to their clients, ask and answer questions, and take the time to ensure their clients understand their situation and are invested in good health-seeking behaviors. • Streamlined service provision, including on-site services, greatly increase young people’s motivation to schedule and keep their appointments.

S ummary o f k e y you t h r e comm e ndat ions • Implement a ‘Youth-to-Youth’ approach to HIV treatment, care and support. • Design a one-year transition program to support the shift from pediatric/ adolescent to adult care. • Empower adolescents to take the lead in their own care by implementing online personal case management and training youth in advocacy skills. • Make service providers accountable for their quality of care. • Continue investing in psychosocial support for all ages, including peer support groups. • Work with clinics to make their atmosphere less stigmatizing and more welcoming.

Expert Conference on Transition Program Planning O b j e c t iv e To bring together multidisciplinary experts in HIV and adolescent health to discuss issues around and build strategies for successfully transitioning children living with and affected by HIV through adolescent and into adult HIV care, treatment and support services. Please see Appendix 2 for full event agenda.

Par t icipan t s Twenty-six experts participated in the conference (Please see Appendix 3 for participant list). Thirteen government, nongovernment and academic organizations were represented, among them: • American Academy of Pediatrics (AAP) • Catholic Relief Services (CRS) • Children’s National Medical Center

Participants in the Expert Conference on Transition Program Planning. David Snyder for CRS

• Howard University School of Medicine, Department of Pediatrics • Health Resources and Services Administration (HRSA) • Johns Hopkins Bloomberg School of Public Health • Maryland Department of Health and Mental Hygiene • National Alliance to Advance Adolescent Health • Trust for America’s Health • Society for Adolescent Health and Medicine • Tulane University • United States Agency for International Development (USAID) • Maryland Mentors • University Maryland School of Nursing • University of Maryland AIDS Legal Clinic • University of Maryland Department of Pediatrics

Framing t h e D iscussion abou t Transi t ion P lanning In the first portion of the conference, experts presented on the concerns of youth living with or affected by HIV in resource limited settings. Four CRS OVC Program Managers from Uganda, Kenya, Zimbabwe and Nigeria offered their insights on the challenges they face in their own countries; Dorrett Byrd from CRS outlined CRS’ long history of support to children and youth around the world; Gretchen Bachman from USAID and Dr. Vicki Tepper from the University of Maryland (UMD) provided their overviews of transition planning, both from the international and the US perspectives. (See Appendix 4 for complete power point presentations.) HIV technical experts discuss ways to transition adolescents into adult HIV services. David Snyder for CRS

Following these presentations, participants divided into three groups to discuss special topics of interest.

D iscussion t opics Participants divided themselves into three multidisciplinary groups to discuss: 1. Barriers to transition: What are the barriers to successful transition? 2. Psychosocial factors: What is the influence of psycho-social and socio-cultural factors on transition planning? 3. Health policies: What are existing health policies and policy gaps in transition planning?

D iscussion ou t com e s Conference participants identified the issues related to systems, providers, caregivers and youth that create barriers to successful transition, the non-medical issues that influence transition planning, and the gaps in health policy that need attention. They then made a series of recommendations for next steps that can help meet those identified challenges.

B arri e rs t o t ransi t ion Participants listed numerous challenges to successful transitioning. They focused mainly on the need to place transitioning in a broader psychosocial and sociocultural context, the need for data, tools and a transitioning framework, and the need for youth-friendly services. Their discussion is summarized below.

“We need someone to say, ‘We’re not going to hold your hand anymore but we’ll show you the direction you have to walk. We’ll show you that Yellow Brick Road.’” - Youth participant

• Community involvement is needed to support transition. Without community engagement, provider experience has shown that OVC programs can create dependence; communities assume adolescents are the “program’s concern.” Caregivers, in particular, need to know in advance that transitioning will take place and know what to expect. Misinformation, fear around disclosure of perinatal HIV infection, and worry at no longer controlling their child’s healthcare can lead to resistance, stress and delays on the part of caregivers. • Healthcare transitions need to be placed in their social and economic context. At this time in their life, adolescents are dealing with numerous changes in social service provision – not only with a change in their healthcare provider. Many social services for children end at age 18, while others end at age 21. An effective program will look at the individual context. Programs also need to be aware that different cultures have different expectations for young people’s roles and responsibilities. Definitions of “child” and “adult” vary between cultures. Also, geography affects the degree of support that young people need at the different stages of their life – urban youth tend to marry later, have more economic resources and a higher level of schooling than rural youth do.

• Evidence-based framework and implementation tools are essential. American Academy of Pediatrics (APP) algorithms, records of best practice and the like do not exist. HRSA has framework would build transition preparation into the system, outline the best stage to

HIV should empower your life, not limit it.”

begin discussing transitioning with communities, and track children to continually assess

- Youth participant

some materials on transition but they are difficult to find and not comprehensive. A strong

how ready they are for transition (as children develop at different speeds and the most appropriate transition time will vary between individuals). Particular attention needs to be made to ensure that unplanned transitions are not suddenly happening as the result of loss of funding. • Youth have unique challenges and need support to develop the soft skills they will need to successfully negotiate the world of adult care and treatment. Children mature at different rates; an individualized approach and sensitivity are needed to support them to transition at the time most appropriate for them. Youth may lack a number of key skills (e.g. how to negotiate complex healthcare systems and take more responsibility for their own care), attributes (e.g. confidence and self-esteem) and knowledge (e.g. what a health card is). Therefore, pre-transition support is needed to help children understand their responsibility for adherence and self-management. • A common understanding of “transitioning” is needed among all stakeholders. Youth and caregivers may not be aware of what “transitioning” means and service providers may not be in agreement about what it entails. • Facilities should make an effort to be more youth-friendly, including soliciting young people’s perspectives on the services and decisions that affect them, seeking to understand their personal as well as medical issues, and ensuring that time and personnel are set aside to discuss upcoming changes with young people and answer their questions. Providers need to make sure that their expectations for youth are realistic and that they are fulfilling as much of the youth’s needs as possible. HIV is often surrounded by a heavy climate of stigma and discrimination – adolescents may be concerned that service providers will not welcome them if they are pregnant or they may be intimated to seek care from a facility whose clients are older and possibly in worse health.

P sychosocial fac t ors Children – and especially orphans and vulnerable children – do not always have the opportunity to transition gradually into adulthood. Conference participants asked, “What is adulthood and when does a society decide a child is an adult?”; “How can/do programs support children to have a more manageable transition , take on adult responsibilities and have more agency in their care?” • Transition programs need to be in line with sociocultural definitions of childhood and adulthood. In some societies, an adult is someone who is economically independent; in others it is a married person or a parent; in others it is a person with certain achievements or community visibility. Programs will be more successful if adolescents and the greater community recognize the need and appropriateness of transitioning. • Adolescents need to be deeply involved with the operation of the program. Involving them in planning will make programs more targeted, appropriate and effective. Giving them paid and/or volunteer work as project implementers will increase their personal skills and allow the project to better reach its beneficiaries.

• Adolescents should be linked to non-healthcare areas of support. Supporting children’s acquisition of adult responsibility is likely to positively affect their adherence and positive health-seeking behaviors. Supporting them to manage key areas of their lives will also improve their overall health and wellbeing. Possible areas of support include psychosocial support, food security, and economic strengthening interventions such as skills building, financial education and management skills, access to financial services and mentorship.

H e alt h polici e s Group members expressed concern that, despite wide discussion, there are rarely policies in place to address transition. Key points raised include: Dr. Jay A. Perman, President of the

• There need to be new, more comprehensive definitions of key terms developed and

University of Maryland, addresses

accepted by all stakeholders. Donor, organization and service provider understandings

participants during the final conference

of “adolescent”, “youth” and “vulnerable” determine who is accepted into programs and

session. David Snyder for CRS

who is not. For example, consensus is needed on how to support young people who are pregnant, married or sex workers. One option is to use the term “Vulnerable Adolescents and Young Adults” (VAYA). • Policies are needed to ensure transition programs are costed, budgeted and linked to funding. • Existing healthcare training policies need revision to ensure that healthcare providers are trained on service provision across age groups. Training should focus on prevention and reach providers from health professionals to community volunteers. • Advocacy and multisectoral partnerships are needed. Partners will vary according to each country’s specific goals, but may include: the United States Government, academic institutions, ministries of labor and health, and the private sector. • Clear timeline guidance is necessary. This will keep providers from ‘holding on’ too long. It may be useful to establish a third party – preferably a community health worker – who is responsible for facilitating the transition process

S ummary o f k e y r e comm e ndat ions f rom e x p e r t s • Create an evidence-based framework and implementation tools for transition programs that include clear definitions of key concepts (e.g. “vulnerable adolescent” and “transition”), establish timelines for transition, provide capacity building guidance for providers, volunteers, caregivers and other stakeholders, take into consideration the sociocultural context of individual communities, and rely on multisectoral partnerships. • Put youth at the center of program planning and implementation. Young people must be involved in the planning and implementation of transition programs. Each young person’s developmental stage, sociocultural environment, capacity and non-health needs must be taken into account when assessing if they are ready to transition and to plan their transition with them. Service providers must be active in welcoming youth and working with them on a personal level. Mentorship is essential to providing personal support and guidance and positive role models. • Integrate non-healthcare support into transition planning in order to create holistic programs. Adolescents must also be supported to access transition-related services such as food security, economic strengthening (including microfinance and financial management), psychosocial support and capacity building. • Make transition programming sustainable by seeking multisectoral support and community buy-in, undertaking multi-level advocacy for policy support and linking transition activities to clear funding lines in OVC or other relevant programs.

Next Steps Experts suggested a number of possible next steps for improving transition planning across countries. According to participants, one of the first steps should be meeting with HRSA and the American Academy of Pediatrics (AAP) to review existing tools, resources and algorithms. Then, operations research must be carried out to establish a basis of evidence on which to create new or updated implementing tools and guidance, as well as a transition framework. Other first steps would be to get consensus among various stakeholders regarding common definitions of key terms (e.g. “vulnerable adolescent” and “transition”) and to develop ways to track and monitor the transition process.

Appendix APPENDIX A: Agenda for International Youth Leadership Summit APPENDIX B: Agenda for Expert Conference on Transition Program Planning Appendix C: Expert Participant List Appendix D: Presentations from Expert Conference

Appendix A Ag e nda f or I n t e rnat ional You t h L e ad e rship S U M M I T

Tim e

S e ssion Ti t l e

10:00-10:30

Registration

10:30-10:45

Welcome, Introductions and ice breaker

10:45-11:00

Introduction to forum objectives and confidentiality

11:00-12:00

Group discussions

12:00-1:00

Lunch

1:00-1:30

Transfer to Conference location

1:30-2:15

Large group report-back and preparation for presentations to experts

2:15-2:30

Break

2:30-2:45

Welcome

2:45-3:45

Youth Perspectives on OVC & HIV Programming

3:45-3:55

Where do we go from here?

3:55-4:00

Closing

Appendix B Ag e nda f or E x p e r t C on f e r e nc e on Transi t ion P rogram P lanning Tim e

S e ssion Ti t l e

S p e ak e r & O rgani z at ion

10:00-10:15

Welcome and Introductions

Sean Callahan, CRS

10:15-10:30

Introduction to OVC and Transition

Dorrett Byrd, CRS

10:30-10:45

Perspectives from a former OVC Project Beneficiary

Abel Adole, Nigeria

10:45-12:00

Panel: Transition Planning for Adolescents in African OVC Programs

CRS OVC Program Managers:

Mychelle Farmer, CRS

Adetayo Banjo, Nigeria Alice Moyo, Zimbabwe Irene Atuhairwe, Uganda Khadija Karama, Kenya

12:00-12:15

Transition Planning in US Government-funded OVC Programs

Gretchen Bachman, United States Agency for International Development (USAID)

12:15-12:30

Transition Planning in Domestic HIV Programs

Vicki Tepper, IHV, University of Maryland

12:30-1:30

Lunch & Discussion Groups Group #1: Barriers to successful transitioning

Khadija Karama, CRS Program Manager, Kenya Irene Atuhairwe, CRS Program Manager, Uganda

Group #2: Psychosocial and sociocultural influences on transition planning

Alice Moyo, CRS Program Manager, Zimbabwe

Group #3: Health policies and transition planning

Adetayo Banjo, CRS Program Manager, Nigeria

1:30-2:00

Discussion Group Report Back

2:00-2:30

Transfer to the University of Maryland

2:30-2:45

Welcome

Jay A. Perman, President of UMD

2:45-3:45

Youth Perspectives on OVC and HIV Programming

Attendees from Youth Transition Conference

3:45-3:55

Where do we go from here?

Mychelle Farmer, CRS

3:55-4:00

Closing

Appendix C E x p e r t Par t icipan t L is t NAME

I N S T I T U T I O N / AG E N C Y

TITLE

Sean Callahan

CRS-Baltimore

Executive Vice President

Lisa Tuchman

Children’s National Medical Center

Assistant Professor

Margaret McManus

National Alliance to Advance Adolescent Health

President

Selwyn Ray

Maryland Mentors

Ligia Peralta

University of Maryland

Associate Professor of Pediatrics, Chief of the Division of Adolescent and Young Adult Medicine, Director of the Adolescent HIV Program

Daniela Lewy

Johns Hopkins Bloomberg School of Public Health

Research Associate

Renee Jenkins

Howard University, School of Medicine, Department of Pediatrics

Professor and former President of the American Academy of Pediatrics

Karen Hendricks

Trust for America’s Health

Director of Policy Development

Sara Bowsky

USAID

Sr. HIVAIDS Technical Advisor

Gretchen Bachman

USAID

Sr. Advisor, OVC Director of Community-based Planning

Margarita Gonzalez- Figueroa

HRSA

Irene Atuhairwe

CRS-Uganda

OVC Program Manager

Adetayo Banjo

CSRS-Nigeria

OVC Program Manager

Alice Moyo

CRS-Zimbabwe

OVC Program Manager

Khadija Karama

CRS-Kenya

OVC Program Manager

Carrie Miller

CRS-Baltimore

HIV Technical Advisor

Caroline Bishop

CRS-Baltimore

HIV Technical Advisor

Dorrett Byrd

CRS-Baltimore

Director of Program Quality and Support Department

Terry Hawkins

Maryland Department of Health & Mental Hygiene

Health Services Administrator

Mychelle Farmer

CRS-Baltimore

HIV Technical Advisor

Vicki Tepper

University of Maryland, Department of Pediatrics

Director of Pediatric AIDS Program

Hannah Graff

Trust for America’s Health

OHR

Heather Ray

Tulane University

Researcher

Michele Broemmelsiek

CRS-Baltimore

AIDSRelief Chief of Party

Kathleen Kahlau

CRS-Baltimore

Office of Legislative Affairs

Nina Wu

University of Maryland AIDS Legal Clinic

Attorney

Caroline Orwenyo

University of Maryland, School of Nursing

Registered Nurse

Keith Selden

Children’s National Medical Center

Manager

Jay A. Perman

University of Maryland

President

Appendix d P r e s e n tat ions f rom E x p e r t con f e r e nc e Dorrett Byrd, CRS

WELCOME! DEVELOPING A FRAMEWORK FOR TRANSITIONING CARE AND SUPPORT OF HIGHLY VULNERABLE YOUTH Dorrett Byrd Director Program Quality and Support Department September 16, 2010

CONFERENCE GOAL: Conference participants will develop a framework for transition p planningg for adolescents and yyoungg adults enrolled in OVC and pediatric HIV treatment and support programs.

Back to the Beginning

Advancing and Expanding

HIV and AIDS

Orphans and Vulnerable Children • OVC are a priority population for CRS • Private investment in learning and innovation for OVC • Strategic focus on addressing family and community capacity to care for children, while also empowering children – Economic Strengthening – Psychosocial Support

Dorrett Byrd, CRS (continued)

Emerging Issues

…and now what?

Answers Welcomed

Conclusion

Thank you For additional information on CRS’ OVC programs, please visit: p p g q y g http://www.crsprogramquality.org/?cat=18

Vicki Tepper, IHV, University of Maryland

Overview Transition Planning in Domestic HIV Programs



Vicki Tepper, Ph.D. Associate Professor of Pediatrics University of Maryland School of Medicine

Who are Perinatally HIV-infected Youth?  



This is now an adolescent epidemic Disproportionate representation of youth of color and experiencing chronic poverty High rates of pre-natal illicit/street drug and alcohol exposure Many were born to high risk women with heritable psychiatric disorders History of disruptions in placements leading to multiple separations from parents and caregivers Extended period of less than optimal HIV medical care (preHAART) cognitive deficits, including encephalopathy Impulsivity, impaired judgment and decision making

From the Youth’s Perspective 

Perinatally infected youth feel very differently about living with HIV than do their peers who acquired HIV via risk behavior “We were born this way” “We did not have a choice”  “There is no before I had HIV” 

Understand challenges facing vulnerable adolescents in the United States Identify strategies used to address transition challenges g Describe current trends in the transition movement in the United States

Who are Perinatally HIV-infected Youth? 

They were not expected to survive!

They were not expected to survive 

Impact on family/caregivers Supervision fatigue Changing roles and responsibilities for care  Typical developmental struggles consistent with adolescence  



Impact p on aging g gp perinatal y youth Typical developmental struggles consistent with adolescence Emotionally and psychologically unprepared for adulthood  Lack of direction for the future 





Impact on health care providers 

Programs not geared toward transition as this was not considered a possibility at program inception

Vicki Tepper, IHV, University of Maryland (continued)

The Intersection of Developmental tasks of Adolescence and HIV     



Development of self-esteem and healthy identity Establishing autonomy Mastering abstract thought processes S ki education Seeking d ti and d employment l t Establishing positive, intimate peer relationships

Special Challenges faced by HIV Positive Youth 



Disclosure of illness to family, friends, work, children and partners Development of identity within the context of living with a chronic illness

Now- consider these tasks in the context of living with HIV/AIDS

Bottom Line

Leaving Never Never Land…

The transition through adolescence into young adulthood is one of the most difficult periods for adherence to treatment across medical conditions  Potential for poor individual and public health outcomes  It is imperative for us to work together on developing a bridge from Pediatric to Adult care 

…Or how to plan for transitioning from Pediatric to Adult HIV care for perinatally infected youth

Interaction of Development and Transition 



Adolescents living with chronic illnesses have to work through the issues of dependence for health care management and the tasks of adolescence at the same time In addition to issues related to developmentally appropriate separation from family, they have to repeat the process with the health care team who is like a “second family”

Parent/Caregiver Concerns  



Will the adolescent receive the same care Will adult providers include them the way the pediatric providers did in the treatment planning W ll the Will h adult d l care team hhave the h same kknowledge l d that the pediatric team demonstrated

Vicki Tepper, IHV, University of Maryland (continued)

Patient concerns “I am not ready to grow up” Will the adult providers understand me The patient feeling “dumped”, “abandoned”, tossed into the adult milieu Leave behind their medical team who is like extended family The emergency room/ Admissions to an adult service

  



Three Stage Process 

Therapeutic discharge 



Warm hand off 



When the conversation first occurs about transition



Therapeutic Discharge   



Beginning the new relationship 

Warm Hand-off 



Transitional health care visits (see both pediatric and adult providers at same time) Orientation materials for new adult patients and their families ((tips, p , intro of staff with p pictures)) Orientation visit before first medical visit

Affirm accomplishments & competencies Reframe discharge to “commencement” Address feelings of grief and loss (by youth, families & providers) Help plan for loss of formal and informal social supports for youth and their families Help parents/caregivers prepare for changing roles

Empathic Intake 

Help adult providers acknowledge and accommodate to the “pediatrics experienced” patients 



There is no standard, suggestions include: At the time of diagnosis or initial visit  At every well-child visit, as part growth & development p and anticipatory p yg guidance  At first signs of puberty  Two years before change in insurance coverage  Two years before anticipated transition 

First transition activities

Empathetic intake 

When to initiate the transition process?

Family/patient as “expert partner” in own care

Help the patient and families recognize and address issues in establishing new medical relationships Proactively identify differences between pediatric and adult care in terms of “culture”, procedures, policies, practices, expectations…

Gretchen Bachman, United States Agency for International Development (USAID)

Total USG Assistance to Vulnerable Children & their Families

Orphans & Vulnerable Children

Gretchen Bachman, Sr. Technical Advisor Orphans & Vulnerable Children United States Agency for International Development

President’s Emergency Plan for AIDS Relief

• Public Law 110-293 “Lantos-Hyde Act” • Five year $48 billion program for international HIV/AIDS, tuberculosis, and malaria programs pp care for 12 million individuals infected with • To support or affected by HIV/AIDS, including 5 million orphans and vulnerable children • Coordinated by the Office of the Global Coordinator at the Department of State and includes USAID, Departments of HHS, Defense, Labor, Commerce, and the Peace Corps

Counting Requires Indicators Individuals eligible for support services • People living with HIV (PLWHA), including pregnant women • Family members, caregivers, or other household members living with or caring for an HIV-positive individual or OVC p by y HIV ((<18 yyears old)) • Children orphaned • Children made vulnerable due to HIV (<18 years old) (e.g. in high prevalence communities due to break down in community support, loss of teachers, or other social norms as a result of HIV epidemic) • Infants born to HIV-infected mothers

Support Services:

• Over $1.86 billion in FY 2008 for 2,044 projects to assist vulnerable children and their families in 113 countries. • In addition, the USG provided an estimated $3.28 billion for programs that complement and are strategically linked to the goals of PL 109-95 (the Orphans & Vulnerable Children’s Act of 2005). • Youth programs key throughout USAID and feature in more than 40 country programs across multiplesectors Source: Third Annual Report to Congress on Public Law 109-95, the Assistance for Orphans and Other Vulnerable Children in Developing Countries Act of 2005: U.S. Government and Partners: Working Together on a Comprehensive, Coordinated and Effective Response to Highly Vulnerable Children, December 2009

Policies Require Definitions • Child: “A person below the age of 18” (CRC) • OVC: “Children who have lost a parent to HIV/AIDS, who are otherwise directly affected by the disease, or who live in areas of high HIV prevalence and may be vulnerable to the disease or its socio-economic effects” ff t ” (A (As d defined fi d b by UNAIDS UNAIDS, and d reiterated it t d b by th the Hyde-Lantos Act that reauthorized PEPFAR) • Youth: ‘The United Nations, for statistical purposes, defines “youth”, as those persons between the ages of 15 and 24 years, without prejudice to other definitions by Member States.’

Adolescent Populations are Extremely Diverse… Programs Need to be Flexible to Context & Individual Needs

“Investments in adolescents will have limited yield unless they are more specifically targeted to subsets of adolescents adolescents, differentiated by age, gender, marital and schooling status, social status, economic class, living arrangements, and urban/rural residence.”

• Psychological, spiritual, preventive, food & nutrition, shelter, protection, access to health care, education/vocational training, and economic strengthening.

Gretchen Bachman, United States Agency for International Development (USAID) (continued)

Contextualize Targeting – it’s more than orphan status that counts Fig. 1: Regression estimated determinants of school attendance 0.5

Country

Number of beneficiaries served (No. of contacts)

Males

Females

10-14 years

15-19 years

20+ years

Burkina Faso

6216 (6860)

56%

44%

30%

63%

Ethiopia

10866 (10873)

58%

42%

22%

45%

33%

Guinea Bissau

7625 (8167)

57%

43%

37%

56%

Mauritania

5452 (8115)

83%

17%

28%

42%

25%

Malawi

15471 (19666)

54%

46%

18%

31%

50%

Orphan Female

0.4

percentage points

Conventionally Conﬁgured Youth Programs Exclude Key PopulationsYounger Out-of-School Girls and Married Girls

Urban 4th wealth quintile

0.3 0.2 0.1 0 -0.1

ETH

KEN

LES

MAD

MLW

MOZ

NAM

RWA

TNZ

UGD

ZAM

-0.2

A multi-variate analysis of DHS data from 11 countries showed that wealth, geography & gender; are better determinants for schooling than orphan status

Source: Campbell, P. – UNICEF 2008

Age and Gender Distribution of Participants in “Youth” Programs Demographic Characteristics. Prepared by Adam Weiner. See resource listings for full references and authors of each coverage exercise.

Focus on Building Health, Social and Economic Assets

Trends

Planning basic health information entrepreneurship training control over savings

Building capacities

Health * Knowledge * Skills * New Health Technologies * Introduction to Services

Social Capital * Social connections * Buddies * Personal Documentation * Mentors * Safety Nets

Economic Resources * Financial Capabilities Training * Access to Entitlements * CCT * Entrepreneurship * Saving Accounts

• Strengthening social systems/building HR for social services • Marrying SGBV & Child Protection; prevention & OVC programs • Targeted HIV testing to OVC populations • Children within MARP (most at risk populations) • Youth (& adult) economic security/livelihoods • Cash and other asset transfers • Monitoring comprehensive child well-being

How HIV and AIDS Affects Children HIV infection

Possible distancing by parent, disclosure issues Children may become caregivers

Increasingly serious illness

Psychosocial distress Economic problems

Thank You

For further information, please visit: www.PEPFAR.gov www.USAID.gov

Deaths of parents & young children Problems with inheritance

Children withdraw from school

Children without adequate adult care

Inadequate food

Discrimination

Problems with shelter & material needs

Exploitative child labour Sexual exploitation

Reduced access to health services

Institutionalization Life on the street Increased vulnerability to HIV infection

Adapted from John Williamson

Mychelle Farmer, CRS



Mychelle Farmer, M.D. HIV/AIDS Technical Advisor, Catholic Relief Services 



•

• •

•

OVC is still a broadly recognized term Organizations receiving funds other than PEPFAR embrace a generalized li d concept off vulnerable youth living in resource-limited countries “Highly vulnerable youth” is now widely accepted and used to refer to youth at risk

As OVC become older adolescents, an effective approach is needed to support their transitions Consider barriers to care Plan transitional support consistent with their development and social circumstances Consider policies that facilitate transition



 

Ten percent of funding is dedicated to assistance for orphans an vulnerable children PEPFAR defines OVC as children hild and d adolescents 0-17 years of age, orphaned or made vulnerable due to HIV and AIDS. Over four million OVC are in care.

OVC programs have been in existence since 2004, and many enrolled when school-aged Successful programming has improved health, education, and social outcomes for children now transitioning into adulthood Approximately 25% of OVC in CRS programs are over the age of 12 years, thus many will transition out of our support programs.

Learn about existing services for adolescents that provide care and support as they transition to adulthood Understand the g gaps p in support pp services Develop a framework that will support and maintain positive gains experienced by youth in OVC programs

Adetayo Banjo, CRS Nigeria

Nigeria Introduction

Overview of CRS Nigeria OVC - SUN Project Adetayo Banjo Program Manager 7D/SUN CRS Nigeria Program

• Population 140 million • HIV prevalence 4.6% p p • 6.4 million people living with HIV • Estimated 1.8 million AIDS-related orphans

What we are doing

North Central States… • 6.1% HIV prevalence • Least served by NGOs • Initial response to epidemic poor • Currently supporting 20,347 orphans

• Youth Friendly Clubs • Peer – Counseling • Vocational/ApprenticeshipTrainings Trainings

What we would like to do • User friendly clinics for youths/separate clinic times for adolescents –Transition Clinics • Increased counseling services • Transition planning to be introduced from beginning of care and treatment (from 15 years) • Establishment of peer support groups

• • • • •

Transition in the areas of Post primary education Post secondaryeducation education Vocational education Employment

Adetayo Banjo, CRS Nigeria (continued)

Thank you!

Alice Moyo, CRS Zimbabwe

Children Served • 1.7 million OVC residing in Zimbabwe

Zimbabwe’s OVC Program

• CRS Zimbabwe works with 20,000 OVC, bias towards girl child • OVC activities in 8 of 10 provinces through 20 partners

Alice Moyo

Transition Planning in our OVC Program

Transition targets by age (over 17) • Mentorship • Economic Stren g gthenin g • Vocational training

Zimbabwe’s OVC Program

Alice Moyo

Irene Atuhairwe, CRS Uganda

INTRODUCTION AIDSRELIEF OVC PROGRAMME UGANDA IRENE ATUHAIRWE DUHAGA

• Estimated population of 30 million people in Uganda • Estimated 2 million OVC • AR works with 18 LPTF and 3 CBOs. • AR is serving providing treatment to 2500 children.

AIDSRELIEF ACTIVITIES

Education Support

 Provision of HIV care and treatment of Positive children.

 Education support: This aims at providing OVC with

 Psychosocial support for all OVC  Educational support  Child protection  Food security/nutrition.

OVC receiving scholastic materials

opportunities to attend and remain in school through provision of scholastic materials.  Care givers of children 0 to 5 years are educated on responding to the psychosocial needs of this age group.  Adolescent OVC who have dropped out of school are supported to attend apprenticeship trainings.

Child protection • Child protection is one of the underserved programme areas

in Uganda.

• AR recognizes the need to empower communities to respond

and deal with issues of child rights.

• Awareness on child rights and responsibilities, responsibilities birth

registration, property inheritance among caregivers for children through trainings and sensitizations. • Referral and net working with government structures to safe guard and protect children's rights.

Irene Atuhairwe, CRS Uganda (continued)

Food Security

Community workers setting up a demonstration.

• AIDSRelief focuses on accessibility and utilization of food to

promote better health.

• This is achieved through training caregivers and OVC in

kitchen gardening.

• This enables caregiver have access to home grown fresh

vegetables in the process increasing micronutrient intake for children. • Micronutrient deficiency is high among Ugandan children, 70% of Ugandan children are anemic and 45% have vitamin A deficiency.

OVC care taker showing off her garden in a Kampala surburb.

Food Tower at A health facility.

Children learning how to prepare a Sack Garden.

Psychosocial support • Coping mechanisms – life skills development. • Recreational activities like retreats, Music, dance and drama,

Sport.

• Support groups: provision of peer to peer support. • Youth Y h iinvolved l d iin lleadership d hi andd ddecision i i making. ki • Professional counseling for children and their care givers. • Designated child clinic days.

Irene Atuhairwe, CRS Uganda (continued)

Members of a support group performing at a function.

Children in an OVC retreat.

Children provided with Psychosocial support. AGE BY SEX

CENTRAL

NORTH

WEST

MALE (0-4)

148

119

MALE (5-14)

291

208

152

MALE (15-17)

273

FEMALE (0-4)

120

FEMALE (5-14) (5 14)

609

332

288

FEMALE (15-17)

277

TOTAL

1692

893

810

BEST PRACTICES  Community involvement in mobilization of OVC.  Services are brought closer to the children at community

level.

 Integration of services with ART and Nutrition services.  Active A i iinvolvement l off children hild iin programmes as peer

leaders.

YOUTH PARTICIPATION  Youth are engaged in key activities like health education talks

to fellow youth on issues of Adherence, life skills and HIV prevention.  Youth are engaged as facilitators of programmes for example prevention strategy using Value of life curriculum. This is facilitated by Youth.  The food security trainings are also facilitated by youth.

Khadija Karama, CRS Kenya

HIV Prevalence and Project Coverage

CRS Kenya OVC Project Overview Presented by Khadija Karama

• The HIV national prevalence 7.4% • 1.6 million children have lost one or both parents to AIDS • Approximately 90,000OVC served under 4 projects

APHIA II

TCB

APHIA II & OVC Trac k

KAIS report 2007

Transition plans– socioeconomic Education and Vocational Training 41.7%OVC age category 6 – 12yrs 45.4 %age category 13 - < 18yrs • Support for secondary education • Support for enrolment to vocational institution/continuation of support for OVC >18yrs • Purchase for start up kits for graduates in vocational training • Linking OVC for job opportunities after completion of training • Integration of IGAs in OVC groups for youth in and out of school

Future Plans • Have a documented transition plan • Innovation – integrate bussiness/finacial skills in the saving and loaning activities for IGAs • Strengthen Agribusiness interventions • Lobby for tertiary education support • Lobby for support for youths from private partners/other stakeholders and Government • Integrate youth in adult groups for mentorship

Thank you! Asante Sana!

228 W. Lexington Street Baltimore, MD 21201-3413 USA Tel: 410.625.2220