Young People and HIV Maria Phelan Children Young

Young People and HIV Maria Phelan Children & Young People HIV Network www. ncb. org. uk/hiv Email: hiv@ncb. org. uk

Children & Young People HIV Network Aim to give a voice in policy and practice development to children and young people who live in the UK and are infected with affected by HIV. www. ncb. org. uk/hiv

Children, Young People & HIV • In 2005, the total number of under 19 year olds were infected with HIV was 1185 (HPA, 2007) • Mean age 11 • Number affected children & young people not known but educated estimate 20, 000 • In 2005, 1 in every 450 births was to an infected woman. (HPA, 2007)

Impact of HIV on Infected Children • • • Physical development Stigma Disclosure Secrecy Adherence Support needs • • Family relationships Isolation from peers School Impact of public perception of HIV • ‘Normal’ childhood • Sexual health needs • Criminalisation

Issues Young People Identify • • • Relationships Being independent Living a ‘normal life’ Talking in families Wanting to know their story Difficulty with lying and keeping secrets Managing medication around life Loss and bereavement The future

Transition From Paediatric to Adult Services

What is Transition? “ The purposeful, planned movement of adolescent and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems ” (American Society for Adolescent Medicine, 1993)

Transition Policies • DH - generic • CHIVA – HIV Process over years: • Start with disclosure of HIV status • Adapt to individual maturity and circumstances. • Aim to transition into youth clinic by 16 and into adult service by 21.

Models of Care • Family clinic with adult service • Integrated clinic for YP • Separate specialist youth clinic • • Protected environment May need additional transition into adult clinic • Specialist paediatric and adult service • Needs tight care pathways

Main Challenges Lack of social support • Few living with parents • Stigmatised Poor adherence/attendance • Multidrug resistant HIV • Ill health Teenage lifestyle • Sexual debut/exploration • “Weekends off”

Any Questions? mphelan@ncb. org. uk 0207 843 1911 www. ncb. org. uk/hiv Join-hiv-news@ncb-lists. org. uk