Survey offers solutions to meet the needs of young people with HIV

Very few children are born with HIV in Thailand today. During the 1990s, the Thai government implemented a vast prevention programme in order to control the epidemic that was rife in the North of the country. The reduction of mother-to-child transmission was one of the major successes resulting from these measures. However, before this programme was established, numerous infants were born with the infection. They have survived thanks to antiretroviral treatment, but are now entering the critical years of adolescence, a period where doctors have observed a resurgence of therapeutic failures.

A pressing social demand

The 'Teenagers Living with Antiretrovirals' survey, supervised by researchers associated with IRD, is attempting to comprehend this alarming situation and offer solutions to meet the needs of these young people. Epidemiologists and demographers interviewed 800 adolescents from 12 to 19 years old who were born with HIV, across Thailand. They interviewed them directly about their daily lives, and also interviewed their parents or caregivers about these children's histories.

Adolescence is a time of many questions and can be particularly traumatic when HIV positive: how can sexuality be approached? How can the self-esteem necessary to become an adult be acquired when suffering or having suffered from stigmatisation? How can opportunities be maximized for their future despite the potential consequences of their illness? Faced with so many personal and social difficulties, teenagers sometimes stop their demanding treatment, which requires several doses per day and cannot be interrupted without placing their lives at risk.

A painful history

These young people are entering the fragile period of adolescence, often after a traumatic childhood: a family history disrupted by the illness and the subsequent death of one or both parents; a difficult relationship with the grandparents who are most often their carers; periods of serious illness; and above all the discovery that they are infected with HIV. The best possible disclosure scenario involves discussions with their parents or grandparents, with the support of the medical team. This progressive process allows them to gradually understand the nature and implications of their illness. Yet some still discover their infection by chance, through the indiscretion of adults or classmates.

Changing perceptions

Parents or caregivers also report discrimination experienced by the teenagers such as bullying, insults or humiliation and even physical harassment. Teachers sometimes also appear to be involved, with cases of children being excluded from the school room or banished to the library. Discrimination experienced by children varies greatly from one region to another. It is generally less common in Northern Thailand, where the epidemic appeared earlier and where the population has learned to understand and deal with the illness and accept those who live with Aids.

By demonstrating the importance of stigmatisation of adolescents at a period in their lives when they wish to be like everyone else, the study has shown the extent to which awareness can contribute to alleviating the consequences of the illness. It reveals the needs of families who demand confidentiality and require both social and economic support.

The survey has also revealed the need to reduce the impact of treatments with solutions aimed at the young: a reduction in medication frequency, from twice to once a day, for example, or even allowing  'therapeutic windows'  at weekends, enabling the teenagers to 'forget' about their infection for a while.

The aim of this study is to convey information on the needs and prospects of these children to the healthcare authorities in Thailand. Beyond the specificity of the Thai situation, this information is essential to develop strategies that can be used to help young people living with HIV/Aids and their families to deal with this difficult period. This requires mobilisation to provide specific treatments for adolescents who have experienced treatment failure, the integration of medical care with the school schedule, the creation of awareness in the education system, the protection of children's rights and confidentiality. Surviving through adolescence is currently the key issue for these children.