Transitions into adulthood
for young people living with
HIV in England
How transitions are experienced and
managed by young people and those
supporting them
Emily Hamblin
NCB
18 October 2013
Children and Young People HIV Network
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Free UK-focused network
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Develops and disseminates policy and practice, runs training and
events, facilitates networking and produces information bulletin
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Provides a voice for young people through participation work
Concerned with children and young people living with or affected by
HIV from conception to adulthood
2010-2013 Department of Health funded project on transition
www.ncb.org.uk/hiv
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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
How did young adults (16-24) acquire HIV?
Approx.
130 new
diagnoses
in 16-19s
per year
2012 total = 2,403 aged
16-24 accessing HIV care
Health Protection Agency data: HIV-diagnosed young adults (16-24 years) seen for HIV care by
exposure category, 2012
Young people growing
up with HIV
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1,131 children and young people in UK and Ireland
accessing paediatric HIV care in 2013
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469 had made the transition to adult care (about
50 per year; at average age 17.6)
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Of those in paediatric care:
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79% Black African
51% born abroad
50% access clinics in London; 39% in rest of
England.
Data from the Collaborative HIV Paediatric Study (CHIPS)
Reports up to March 2013
Young people growing
up with HIV
Prevention of vertical transmission = few babies
Development of treatment = new generation living into
adulthood
100%
15+
80%
Percentage
10-14
5-9
60%
1-4
<1
40%
20%
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
0%
Year
Age of children in paediatric follow-up by year, 1996-2012 (CHIPS)
Young people growing
up with HIV
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Often haven’t been told they have HIV until 10+
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Extremely low prevalence outside major urban areas
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Long-term impact of virus and treatment; medical advances (cure?)
HIV invisible within services, schools, couples, families, communities
Migration; bereavement; poverty; poor parental health and caring
responsibilities; social services involvement
Asymptomatic neurocognitive impairment; behavioural disorders;
psychiatric diagnoses
chiva.org.uk
Consultation for
Just Normal Young
People
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123 practitioners from across
England:
o children’s and adult services
o health, voluntary sector and
statutory social care
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45 individuals aged 13-28
Parents and carers
Young people’s transition
Health
Regional networks
for paediatric HIV
care
Transition clinic
Access to specialist
paediatrician,
nurse and wider
MDT
Family clinic
OR
OR
Separate centres
Sexual health
OR
Infectious
diseases
Voluntary sector
Support groups;
Possible family
support before
child is aware of
diagnosis
Support camp;
Online peer
support;
One-to-one
Stop accessing –
though some
volunteer with
younger peers
Most find adult
support services
‘too old’
Limited access to statutory social care; few specialist HIV
social workers – most in adult social care
THE POPULATION AND THE CONTEXT
CHALLENGES IN SERVICE DELIVERY
Diverse needs – e.g. age, transmission route
Developing experience and processes
Getting resources and support
Service coordination
Other practitioners' knowledge of HIV
Can hinge on key individual practitioners
Young
people’s
resilience,
confidence
and hope
RISKS
Dependency on HIV services
Mental health issues
Underuse of services
Loss to follow-up
Poor adherence
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
Stigma
I want to find someone, but,
I don’t know. [...] It’s just
HIV that holds me back.
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.
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Anti-stigma campaigns
Children’s HIV Association clinical guidelines and
quality standard for psychosocial support providers
HIV treatment
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Majority of young people on treatment with varied results
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Every day for the rest of your life, at set times
Good adherence crucial for long-term health and treatment
options (95% aim)
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.
Learning about HIV and treatment
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?’
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Practice sharing for
professionals
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Information resources
for young people
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Voluntary sector – time,
space, explain jargon
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Repetition!
Image from healthline.com
Relationships with
individual practitioners
She’s like part of my family, like, I couldn’t imagine my
life without her.
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.’
Image from timstar.co.uk
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Long-term support for young people
and parents/carers from a range of
services
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Collaborative working
Perceptions of transition
and adult services
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.
Image from qehkl.nhs.uk
(unrelated to quotes)
Being normal
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.
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.
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NHS England service specification for paediatric HIV addresses
transition and identifies voluntary sector and social care as
‘interdependent services’
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Participation and practice development work
Parents and carers
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.
Your Life leaflets
Six leaflets on:
• Studying
• Work and careers
• Telling others about HIV
• Independent living
• Rights (discrimination,
confidentiality, HIV
transmission)
• Transition into adulthood.
Their Life leaflet
For parents and carers of
teenagers and young adults
who have HIV
Their Life addresses:
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Feelings about children
growing up
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What young people need
from parents and carers
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Communicating about HIV,
sex and relationships
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Changes in healthcare and
their impact on young people
and wider family
LifeLinks
A web directory of information and services for
teenagers and young adults who have HIV
www.ncb.org.uk/lifelinks
Studying with HIV
A website for people who work with students, and HIV
practitioners supporting young adults
Thank you
ncb.org.uk/hiv
hiv@ncb.org.uk
An HIV Network event for young people, April 2012
Above: Design inspiration for leaflets
Right: ‘The elephant in the room’ illustration