Lost in Transitions: Current Issues Faced by Adolescents Living with HIV in Asia Pacific

This report is based upon studies of issues faced by adolescents living with HIV in the Asia Pacific region, released in partnership with the United Nations Children's Fund (UNICEF), the United Nations Educational, Scientific, and Cultural Organization (UNESCO), and the Asia Pacific Network of People Living with HIV (APN+) during a special session of the International Conference on AIDS in Asia and the Pacific (ICAAP) in November 2013.

The Lost in Transitions report attempts to capture the experiences of adolescents aged 10-19 who were perinatally infected with HIV and those who acquired HIV through unprotected sex and drug use. It seeks to offer insights into some of the unique issues adolescents living with HIV face, such as pervasive stigma and discrimination. Several participatory processes in addition to research and reviews ascertained that there are five pressing issues affecting adolescent health:

• Disclosure of their HIV status (to them and to others).
• Navigating healthcare systems.
• Dealing with life-long treatment.
• Sexuality and sexual and reproductive health.
• The social environment.

In the section called A Better Way Forward For Us: Our Call To Action, the report details recommendations that are designed to help address the current gaps and improve the health and rights of adolescents living with HIV:

1. There is a need for better data, a better analysis of existing data, and more research. In order to design effective policies and programmes, governments must know at least how many adolescents with HIV (ALHIV) live in their country and how many are accessing treatment.
2. Holistic health services for adolescents living with HIV would include health, care, and other support services to transition toward HIV self-management and into adulthood. Among the strategies that are communicated-related, the document emphasises pre- and post-test/ongoing counselling plus referrals to HIV care. Early engagement and participation of the adolescent and his/her caregivers is deemed essential for future transitions. This engagement includes assuring ongoing communication among the entire team and building a relationship between the adolescent and the new doctor. Peer support groups are cited as one of the best ways of providing treatment education, opportunities to boost self-esteem, mentoring, and healthcare transitions and require significantly more funding and support.
3. To provide adolescents living with HIV the best possible treatment, age-appropriate education programmes are needed. Fun, engaging treatment literacy games are among the tools that can empower adolescents to discuss their treatment and understand changes. In addition, adherence support - be it peer support groups or the use of new technology or social media - could be a potential platform for providing peer-to-peer support and counselling.
4. Sexuality and reproductive health (SRH) education and services must be expanded, and ALHIV specific education, as well as confidential access to SRH services, should be assured.
5. There are many ways to foster a supportive environment, including disclosure from parents to children at an earlier age. ALHIV also need support to develop their skills for disclosure and to help them deal with the consequences. Policies and practices in schools must be supportive so that young people living with HIV can exercise their right to an education. Likewise, governments should remove age restrictions and parental consent requirements that impede adolescent access to medical services, including HIV and SRH services and commodities.
6. To enable adolescent leadership and participation, safe spaces, peer groups, and support groups must be available. Peer education and support groups are ways to gain leadership skills and self-esteem for ALHIV. Networks of PLHIV in Asia Pacific should convene in-country discussions to develop and take steps to put in place a strategy for supporting ALHIV and to develop their skills in research and advocacy.

An annex provides examples of recommended programmes outside the region that support the health and well-being of ALHIV. A second annex outlines the methodology used to formulate the report, including focus group discussions, youth-led consultations, and in-person interviewing and site visits.