Transitions into adulthood for young people living with

HIV in EnglandHow transitions are experienced and managed by young people and those

supporting them

Emily HamblinNCB

18 October 2013

• Free UK-focused network

• Concerned with children and young people living with or affected by HIV from conception to adulthood

• Develops and disseminates policy and practice, runs training and events, facilitates networking and produces information bulletin

• Provides a voice for young people through participation work

• 2010-2013 Department of Health funded project on transition

www.ncb.org.uk/hiv

Children and Young People HIV Network

• Who are young people living with HIV?

• What is their transition journey?

• Challenges expressed by practitioners

• Challenges expressed by young people

• How do we respond?

• HIV Network resources

Health Protection Agency data: HIV-diagnosed young adults (16-24 years) seen for HIV care by exposure category, 2012

How did young adults (16-24) acquire HIV?

2012 total = 2,403 aged 16-24 accessing HIV care

Approx. 130 new

diagnoses in 16-19s per year

• 1,131 children and young people in UK and Ireland accessing paediatric HIV care in 2013

• 469 had made the transition to adult care (about 50 per year; at average age 17.6)

• Of those in paediatric care:

• 79% Black African

• 51% born abroad

• 50% access clinics in London; 39% in rest of England.

Young people growing up with HIV

Data from the Collaborative HIV Paediatric Study (CHIPS) Reports up to March 2013

Prevention of vertical transmission = few babies

Development of treatment = new generation living into adulthood

Age of children in paediatric follow-up by year, 1996-2012 (CHIPS)

0%

20%

40%

60%

80%

100%

19

96

19

97

19

98

19

99

20

00

20

01

20

02

20

03

20

04

20

05

20

06

20

07

20

08

20

09

20

10

20

11

20

12

Year

Percentage

15+

10-14

5-9

1-4

<1

Young people growing up with HIV

• Often haven’t been told they have HIV until 10+

• HIV invisible within services, schools, couples, families, communities

• Migration; bereavement; poverty; poor parental health and caring responsibilities; social services involvement

• Extremely low prevalence outside major urban areas

• Asymptomatic neurocognitive impairment; behavioural disorders; psychiatric diagnoses

• Long-term impact of virus and treatment; medical advances (cure?)

chiva.org.uk

Young people growing up with HIV

• 123 practitioners from across England:

o children’s and adult services

o health, voluntary sector and statutory social care

• 45 individuals aged 13-28

• Parents and carers

Consultation for Just Normal Young

People

Young people’s transition

Health

Voluntary sector

Limited access to statutory social care; few specialist HIV social workers – most in adult social care

Young people’s

resilience, confidence and hope

Professionals’ skill and

dedication

Being able to talk openly about HIV with family, friends and partners

I found out [searching online], and then I just pretended I knew […] No one actually said, like, ‘You’ve got HIV.’

Mum pressures me not to tell anyone.

[My dad is] always there for me, he’s always willing to talk.

We put ourselves down, put ourselves in a box before we even know how the person will react.

Background image from CHIVA website – young people at Support Camp

I want to find someone, but, I don’t know. [...] It’s just HIV that holds me back.

Stigma

I’ve heard there are some signs that you can tell someone’s got HIV. You’d have to have read all the medical stuff, but... [I think] ‘This woman’s looking at me.’ [...] I’m a black girl going into a sexual health clinic.

•Anti-stigma campaigns

•Children’s HIV Association clinical guidelines and quality standard for psychosocial support providers

• Majority of young people on treatment with varied results

• Good adherence crucial for long-term health and treatment options (95% aim)

• Every day for the rest of your life, at set times

• Can involve high pill burden, unpleasant taste, side effects like diarrhoea – Why bother when I feel fine?

Peer support, treatment buddies, directly observed therapy, motivational interviewing, financial incentives pilot, pill boxes, alarms, text reminders, apps...

I brush my teeth, I take my medicine and I go to bed. […] It’s just a system now.

HIV treatment

Learning about HIV and treatment

Image from healthline.com

Do it in stages because it’s not all about cramming everything in and chucking stuff at us every single time. […] If you annoy me, I’ll just block you […] I’ll look back and be like, ‘What did they say again?’

• Practice sharing for professionals

• Information resources for young people

• Voluntary sector – time, space, explain jargon

• Repetition!

I’ve had three appointments; I’ve had three different doctors. […] I need that attachment thing. […] When they ask me about my sexual health, I feel like, ‘Uh, I don’t know if I should talk to you.’

•Long-term support for young people and parents/carers from a range of services

•Collaborative working

Relationships with individual practitioners

Image from timstar.co.uk

She’s like part of my family, like, I couldn’t imagine my life without her.

Everyone’s just sat there, no one’s smiling, it’s in a grey hospital.

I have no idea how things are going to change as I get older.

[Transition] showed me that I was growing up […] Doctors can give advice and stuff but ultimately I was the decision-maker.

I’ve always gone to adults and they’re nice there, they always ask me about school.

Perceptions of transition and adult services

Image from qehkl.nhs.uk (unrelated to quotes)

Services [...] need to realise that HIV is a part of you but that’s not the only thing that might bother us […] We’re just normal young people.

Being normal

Peer support

Meeting people who are just the same as you, who feel, who seek acceptance from the world but they don’t know how to get it.

• NHS England service specification for paediatric HIV addresses transition and identifies voluntary sector and social care as ‘interdependent services’

• Participation and practice development work

Feeling recognised and valued

We live with our children; we know them.

Dignity

I’m not a victim of my circumstances constantly.

Support

If you have a healthy parent or carer, you have a well looked after child.

Parents and carers

Six leaflets on:•Studying•Work and careers•Telling others about HIV•Independent living•Rights (discrimination, confidentiality, HIV transmission)•Transition into adulthood.

Your Life leaflets

Their Life leafletFor parents and carers of

teenagers and young adults who have HIV

Their Life addresses:

• Feelings about children growing up

• What young people need from parents and carers

• Communicating about HIV, sex and relationships

• Changes in healthcare and their impact on young people and wider family

LifeLinksA web directory of information and services for

teenagers and young adults who have HIVwww.ncb.org.uk/lifelinks

Studying with HIVA website for people who work with students, and HIV

practitioners supporting young adults

Thank you

ncb.org.uk/hivhiv@ncb.org.uk

An HIV Network event for young people, April 2012 Above: Design inspiration for leafletsRight: ‘The elephant in the room’ illustration