Study highlights strategies that help teenagers living with HIV feel ready to move into adult care
Ugandan study suggests peer educators, visiting adult clinics, counselling and education can all make the transition process go smoothly.
A Ugandan study has found that trusting peer educators, having counselling, visiting adult clinics and being educated beyond secondary school level are all things that help adolescents and young people living with HIV feel ready to move into adult HIV care.
Moving into adult care from child or teenage HIV services is an important moment for young people living with HIV. If this process is managed well, the move can provide young people with the opportunity to take greater charge of their health and lives. But a poor transition process can cause young people to leave care and stop taking antiretroviral treatment (ART).
While most young people living with HIV move to adult care between the ages of 22 and 24, best practice is to start the transition process early so adolescents are ready to move by the time they are 18.
The Ugandan Ministry of Health provides guidance on managing the transition process. But there is little evidence on how well the guidelines are followed and how the move from teenage to adult HIV care is managed.
To examine this issue, 786 adolescents and young people living with HIV (ages 10-24), attending 9 HIV treatment clinics in 4 Ugandan regions (Eastern, Western, and Northern) were randomly selected to answer a questionnaire. Data collection took place between August 2019 and January 2020.
Participants’ mean age was 17, 62% were females, 46% had no education and 23% were employed. Around half (46%) were living with their parents, and most other participants lived with relatives.
Based on the Ministry of Health’s transition scale, only 6.5% were ready to move to adult care. This low level is likely because most of the facilities in the study begin preparing young people to transition at the age of 20 and most study participants were younger than this.
Participants who trusted peer educators (other young people living with HIV) to support their HIV treatment were more likely than others to be ready to move into adult care. This shows the importance of peer support for adolescents and young people living with HIV, and echoes other findings. Being supported by peer educators can help adolescents and young people develop confidence and coping skills. Friendships can provide similar support, but this means young people have to share their HIV status. In this study, only 48% of participants had told someone they were living with HIV.
Having post-secondary school education was also associated with being ready to move. This may be because participants who were better educated knew more about HIV and self-care. In this study, although 89% of participants knew that they were living with HIV, only three-quarters (76%) knew the kind of medication they were taking, suggesting knowledge gaps for some young people living with HIV despite being on treatment.
Having counselling to cope with fears about moving to adult care was also linked with readiness. Around a third (31%) of participants had received this type of counselling, mostly from peer educators (72%). Fears about losing friends and peers when moving into adult care, experiencing stigma and discrimination in adult clinics, and not having privacy or confidentiality respected, are all concerns that counselling can help to address.
Having visited an adult clinic and being satisfied with the transition process were also linked with being ready to move. Only 12% of participants had visited an adult HIV clinic, but almost all these young people (96%) said the visit helped prepare them for transition.
These findings suggest that starting the transition process should not be judged on age alone, as adolescents and young people who are the same age may be at different levels of development and may reach readiness at different times. Counselling and other transition support should be tailored to meet individual needs.
Future research is needed to assess the quality of HIV care young people receive in adult clinics, and how effective different types of transition support are.