Supporting the health and wellbeing of children and young adults living with HIV

Chiva conference: Bridging the gap – Exploring models for transitioning youth from paediatric to adult HIV care

A thought-provoking session at the 19^th Annual Chiva conference on 4 April 2025 gave attendees the opportunity to hear about three different models of transition of care for young people living with HIV (YPLWH), alongside the real-life transition experience of two Chiva Young People (YP).

As per national guidance, the transition process from paediatric to adult HIV services should be gradual and patient-centred, with a documented transition plan in place. However, significant variations in clinic models exist across the country and young people’s experiences of transition remain varied and often substandard.

The session opened to an excerpt from the Positively Spoken Oral History Project, where two YPLWH described their experience of transition. “The care had gone from gold standard to a conveyor belt. There was no intimacy, no soft touches. The transition was crazy.” 

We were also privileged to hear in the flesh from two young adults about their transition reflections. Whilst paediatric care was described as ‘safe and personal,’ the switch to adult care was ‘badly structured,’ with a ‘lack of conversation between child and adult teams’ and the feeling of ‘being judged’ whilst sitting in an adult waiting room. 

Dr. Amy Evans is a Consultant at Leeds Teaching Hospitals Trust who has overseen the evolution of their HIV transition pathway and Young Adult Clinic since 2009. Covering a large geographical patch, their ‘Youth Model’ recognises the importance of flexible appointment times and ‘walk-ins’ for YPLWH, alongside flexibly sharing care with other centres for YP who may be living between home and university. 

Pre-clinic SMS reminders are sent to support attendance. They use a multidisciplinary team (MDT) approach with access to peer support and the clinic itself is inviting, with a separate waiting room, games, snacks and a ‘comfy atmosphere’ that YP describe as ‘relaxing and friendly.’ 

Jen Kendrick is an HIV Clinical Nurse Specialist at the Hathersage Clinic in Manchester, where they employ a ‘Sexual Health’ model of care for transitioning YPLWH. They too recognise the importance of flexibility with this group of patients, alongside the importance of easy access to sexual health and contraceptive services for this cohort. There is also access to a psychologist and community visits where necessary for those struggling to attend on-site clinics.

Dr. Steve Welch is a consultant in paediatric HIV at Birmingham Heartlands Hospital and spoke about the ‘Across the Lifespan’ model, emphasising that some YPLWH may need to remain within the paediatric or transition care setting outside of the more traditional age parameters. This is particularly relevant to YPLWH with learning disabilities (LD). There is a paucity of available neurological and developmental data for children with HIV in the UK, but the developing brain is known to be particularly vulnerable to the effects of early biological and/or psychosocial adversity. 

The neurocognitive impact of living with HIV on the developing brain, particularly for those presenting with severe disease, e.g. infantile HIV encephalopathy, can result in a wide spectrum of LD and particular difficulties in executive functioning. Healthcare professionals (HCPs) have an important role in recognising where YPLWH’s care is best placed and challenging the age of transition when required.

All speakers recognised the lack of adequate access to psychology services for YPLWH and the huge benefits of a robust peer support model for supporting engagement in care and mental wellbeing. However, the key theme that emerged from the session was the need to listen to YP about their experiences and how care can be improved. 

To this end, Chiva and the Chiva Youth Committee have developed their PREMs Survey (Patient Reported Experience Measures) to capture YP’s views. Find out more about PREMs here and clinics can request a PREMs resources pack by emailing [email protected].

Critical Reviewer: Dr. Verity Sullivan (Axess Sexual Health, Royal Liverpool Hospital, UK)