With more HIV-infected children and adolescents surviving into adulthood, the transition of these young patients into adult care should be a top priority for health services. For adolescents living with HIV, transition is the purposeful, planned movement from paediatric, child-centred or specialized adolescent services to adult-oriented services, and it is an important factor in the long-term health and well-being of an adolescent. The main goal of transition is for adolescents to develop the ability and confidence to be autonomous and responsible for their HIV care by the time they are engaged with adult services. A good transition process also supports adolescents to acquire knowledge and build life-skills, to reduce the risk-taking behaviours that can interfere with adherence to treatment and retention in care.
Transition needs to be carefully planned and managed, taking into consideration the adolescent's medical, psychological and social needs. The way in which transition planning is undertaken depends on the structure of the clinical services that are available. There are four main health care settings where transition takes place:
- From paediatric HIV services to adult HIV services.
- From paediatric services to specialized adolescent services (where available).
- From specialized adolescent services to adult services.
- Within comprehensive family services, from one provider to another, or with the same provider adopting different approaches that recognize the adolescent's evolving capacities and needs.
Transition should be a gradual process of preparing and supporting the adolescent to make the shift from dependence on caregivers to self-management and autonomy, and into more developmentally and medically appropriate care. Carefully planned transition recognizes the evolving developmental, medical, emotional, educational and social needs – which may be vary according to the timing and mode of infection – of the adolescent living with HIV.
Transition can be challenging. Adolescents may be anxious about leaving the 'safety' of paediatric services and the comfort of dependence on caregivers and having to engage with unfamiliar HIV clinics or providers. Parents may be unwilling to 'let go' of adolescents because they are unsure about their child's capacity for autonomy and ability to understand their illness, and they may be fearful of disclosure to others. Hesitancy on the part of parents/caregivers and health providers to encourage an adolescent's autonomy can result in abrupt and destabilizing changes in the adolescent's care, often with a negative effect on adherence to treatment and retention in care. This is why the transition process must start early and be planned and managed carefully, with good communication between caregivers, health providers and the adolescent, and involving the adolescent in all the decisions taken around his or her ongoing care.