Adolescents Living with HIV

148 Pages·2016·4.59 MB·English

Adolescents
Living
with
HIV:
Developing and Strengthening
Care and Support Services
unite for
children
The opinions expressed in this publication are those of the contributors, and do not
necessarily refect the policies or views of UNICEF.
Adolescents
The designations employed in this publication and the presentation of the material
do not imply on the part of UNICEF the expression of any opinion whatsoever
concerning the legal status of any country or teritory or of its authorities or the Living with HIV:
delimitations of its frontiers.
The subjects in the photographs used throught this publication are models who
have no relation to the content.
Extracts from this publication may be freely reproduced with due acknowledgement
using the following reference: UNICEF, 2016. Adolescents Living with HIV: Developing
and Strengthening Care and Support Services, Geneva: UNICEF Regional Ofce for
Central and Eastern Europe and the Commonwealth of Independent States (CEECIS).
For further information and to download this or any other publication, please visit the
UNICEF CEECIS website at www.unicef.org/ceecis.
All correspondence should be addressed to:
UNICEF Regional Ofce for CEECIS
HIV Section
Palais des Nations
CH 1211 Geneva 10
Switzerland
Commissioned by the UNICEF Regional Ofce for Central and Eastern Europe and the
Commonwealth of Independent States (UNICEF RO CEECIS)
Copyright: © 2016 United Nations Children’s Fund (UNICEF)
Adolescents
Living with HIV:
Developing and Strengthening
Care and Support Services
Commissioned by the UNICEF Regional Ofce for Central and Eastern Europe and the
Commonwealth of Independent States (UNICEF RO CEECIS)
unite for
children
Acknowledgements
This handbook was written by consultants Michelle Overton, support worker (Faith
Magda Conway and Amanda Ely from in People).
the UK Children’s HIV Association (CHIVA)
Many thanks to coleagues and
working in consultation with a number of
contributors who reviewed and
partners and collaborators.
provided valuable comments to the
The authors would like to thank Nina online draft publication, especially
Ferencic, Ruslan Malyuta, Marie-Christine Dr. Nadia L. Dowshen (The Children’s
Belgharbi in UNICEF CEE/CIS Regional Hospital of Philadelphia), Sara Paparini
ofce for their trust and support with this (London School of Hygiene and Tropical
work. Medicine), Nisso Kasymova and Victoria
Lozyuk from the (UNICEF country ofces
They would like to thank their colleagues
in Tajikistan and Belarus).
from health and social care in the UK who
have generously given their time and Thank you to the young adults from UK
expertise to support the development who shared their experiences of growing
of this resource. Special thanks to: Dr up with HIV on the videos, and those that
Caroline Foster, Paediatric Consultant attend the Barnardo’s support service in
(Imperial College Healthcare NHS Trust); Manchester for participating in group
Susan McDonald, HIV Clinical Nurse scenes.
Specialist (Imperial College Healthcare
Special thanks goes to the all the HIV
NHS Trust); Dr Tomas Campbell, Clinical
positive children and adolescents we
Psychologist; Jill Hellings, Children and
have met over the years, who have
Families Social Worker (Barnardo’s); Sarah
shared their views and experiences and
Lennox, Children and Families Social
had a profound efect on the way we
Worker (Barnardo’s); Sheila Donaghy,
approach our work.
Paediatric HIV Clinical Nurse Specialist
(St. George’s University Hospital) and
FOREWORD
In 2015, an estimated two million This handbook, with inputs from leading
adolescents (10-19 year olds) were living experts who have trained hundreds of
with HIV worldwide and every hour an professionals, provides indispensable
estimated 26 adolescents were newly tools for strengthening the management
infected with HIV. and care of adolescents living with HIV.
Clinicians and social workers are provided
Adolescents living with HIV have mostly
with step by step guidance on how to
the same dreams and hopes as all other
work with adolescents and parents and
adolescents. Although they often face a
increase their skills-sets to help them
number of health challenges in their day-
engage with and retain adolescents
to-day lives, many of the issues faced by
living with HIV in support services. It
adolescents living with HIV are linked to
describes the challenges of working
broader psycho-social aspects of their
with families and care givers, promotes
lives. In many ways, their experience
holistic models of child-centered
of living with HIV provides the best
assessment and practice, communication
guidance on how to support them to
with families and children, with a focus
realize their rights and their full potential.
on naming HIV, promoting adherence
The continuing high rates of new HIV to treatment and ongoing conversations
infections and growing AIDS mortality and supportive dialogue involving HIV
among adolescents suggests that a positive adolescents as partners and
change in adolescent programming is leaders in their own care.
required. The voices and concerns of
Designed for optimal learning, the
adolescents and young people need
handbook allows to choose written, oral,
to be heard by care providers. Youth-
visual, individual, and group strategies
centred and youth-led approaches that
that best suit diferent learning styles.
engage young people in the planning,
This handbook is about adolescents
implementation and evaluation
and it is for professionals who work with
of programmes are needed. Policy
them. It is meant to be a living document
makers should put more efort into
that adapts as new information and
understanding the distinctiveness of
evidence emerges and it hopes to
adolescence in the context of HIV and
support professionals to build their
make longer term commitments to
confdence, skills and better connections
funding and programme support. There
with adolescents living with HIV.
is an increased need for capacity building
and trained staf. The “All In” initiative
launched by UNICEF and partners to
UNICEF HIV Team
end adolescent AIDS provides a platform
for dialogue with young people, policy
makers, care providers, community
leaders and other stakeholders for action
supporting adolescents.
Defnitions
Adolescent Aged 10-19 years of age.
Parent Biological parent, step-parent, or adoptive parent.
Carer Person who is primary carer of the child, but not their parent.
This can be someone who is a legal guardian, such as a family
member or state provided carer, such as a foster carer.
Young adult Aged 19-25 years of age.
Acronyms
ART Anti-retroviral therapy
ALHIV Adolescents living with HIV
CEE/CIS central and eastern Europe and Commonwealth of Independent States
CHIVA Children’s HIV Association for the UK & Ireland
C&ALHIV Children and adolescents living with HIV
UNICEF United Nations Children’s Fund
UNCRC United Nations Convention on the Rights of the Child
WHO World Health Organization
7
CONTENTS
RTNIDO CU NOIT . 9
hT e gloab l context . 9
dA olescents and VIH . 01
SCE NOIT :ENO CCINIL LA SI SSEU ROF VIHLA . 31
1.1 T he rb ain and neurocognitive uf nction . 31
2.1 A dherence . 41
3.1 R elationships and seux al health educatio .n 51
4.1 nO aw rd disclosure o f VIH . 61
5.1 T ransition to adult car .e 81
SCE NOIT T :OW EHT SP CY SOH CO LAI DEN S FO CVIHLA& . 91
1.2 rG oiw ng up iw th VIH . 02
2.2 M anaging VIH during adolescence . 52
3.2 VIH and the af im l y c ontext . 3
SCE NOIT :ERHT RENLUV ELBA DA SELO CSTNE HTIW
Y RUOIV LA AHEBCA DERIUQ VIH . 63
1.3 I nsecurel y housed or living on the street . s 73
2.3 Seux all y epx loited VIHLA and involved in transactional sex . 83
3.3 VIHLA hw o im suse drug ando/ r alc ohol . 93
4.3 A dolescent em n hw o have se x iw th em n SMA( )M . 24
5.3 nE gag ing iw th health and am naging VIH . 24
6.3 nE sur ing inclusion o f hardt- or- each groups . 4
SCE NOIT :RUOF CARPA O SEH O T CRPA CIT E DNA CILOP SEI . 54
1.4 Coum nication . 64
2.4 T alking to children aob ut their VIH diagnosis . 74
3.4 Cond� entiality . 15
4.4 Saef guarding children and child protectio . n 25
5.4 M anaging eb haviour . 5
6.4 nE sur ing euq alit y and inclusion . 85
Adolescents Living with HIV:
Developing and Strengthening Care and Support Services
8
7.4 nO e t- o-one ow rk . 95
8.4 rG oup ow rk . 16
9.4 G eneral practice point . s 36
SCE NOIT :EVIF SELPM A XE FO KU CRPA CIT E . 76
1.5 P eer support group s. 76
2.5 R esidential intervention . s 86
3.5 O ccasional sessions attached to clini. cs 07
4.5 T herapeutic creative activitie . s 07
5.5 A dvocac y and inu� encing policy . 17
6.5 nO l- ine ac tivities . 27
7.5 Consultation iw th VIHLA . 37
CNEREFER SE . 57
DNEPA XI :ENO cA tivit y sheets to use hw en ow rking iw th CVIHLA& . 7
DNEPA XI T :OW uF rther reading . 131
DNEPA XI :ERHT Maslosw’ Hierarch y o f eN eds . 31
DNEPA XI :RUOF oF ur principles o f om tivational intervieiw ng . 531
DNEPA XI :EVIF oP lic y docuem nts and practice tools . 631
Adolescents Living with HIV:
Developing and Strengthening Care and Support Services
9
INTRODUCTION
The global context
hT is handob o k has eb en rw itten of r Coim ssioned yb CINU FE Regional Oc� e
practitioners ow rking directl y iw th of r CC/E SI as part o f a iw der proej ct
C VIHLA& and of r polic y am ek rs and to assist the developem nt o f support
am nageem nt to help develop services provision of r C VIHLA& in that region , this
and protocols . oT that end , it includes handob o k has eb en produced yb epx erts
polic y and practice guidance of r the rf o m the KU hw o have ow rek d iw th
developem nt o f services , practice om dels children , adolescents and af im lies living
and practical eax pm les . hT e gloab l iw th VIH of r alom st tow decades.
epx erience o f VIH oe� rs am n y shared
eleem nts and this handob o k ree� cts
these , setting out practical guidance
and tools that can eb used in die� rent
settings .
hT is resource aism to:
• Share knolw edge and learning rf o m practice developem nts in the KU that can eb
useuf l in a gloab l context
• nE sure practitioners have a rb oad understanding o f the pscy hological and social
ipm acts o f VIH on childhood and adolescence
• rP oom te the developem nt o f support that responds to the holistic needs o f the
child and adolescent
• rP oom te proef ssional responses to reduce the ipm act o f VIH stigam on children
and adolescents.
hT e handob o k proom tes um lti- to em et the needs o f the child , adolescent
disciplinar y ow rking as the eb st or af im l .y It also acknolw edges
approach to addressing the phsy ical , throughout that VIH disproportionatel y
pscy hological and social ipm acts o f ae� cts om re vulneralb e social groups
. VIH A roub st partnership eb tew en and that this should eb ree� cted in the
health and social care services ensures a practice that is developed.
collaob rative approach , hw ere a o� w o f
coum nication eb tew en practitioners
eix sts and services are ow rking together
Adolescents Living with HIV:
Developing and Strengthening Care and Support Services
10
© CINU C/9231-602/QH Y N/FE . eV rsiani
Adolescents and HIV
hT ere are approix am tel y 2.1 ib llion individual identit . y rF iendships and the
adolescents in the ow rld , over %08 o f peer group , and t�‘ ting in ’ iw th peers ,
hw o m live in the developing ow rld and can eb coem increasingl y ipm ortant .
an estiam ted 1.2 im llion adolescents dA olescence is knonw as a tiem o f ris k
ew re living iw th VIH in 2102 DIANU( S , taking and epx eriem ntation.
.)3102 ]1[
It is tpy ical of r an VIH diagnosis to eb
In ,4102 the OHW produced Health for surrounded iw th secrec y of r am n y
the world’s adolescents: A second chance groups o f people hw o eb coem inef cted .
in the second decade ]2[ hw ich stated that oF r children and adolescents hw o have
over the last decade , VIH had eb coem gronw up iw th , VIH VIH is closel y linek d
one o f the ib ggest killers o f the ow rlds’ to their sense o f hw o the y are , as it has
adolescents , second onl y to road trac� alaw sy eb en a part o f the .m sA such ,
accidents . sA gloab l VIH rates decline secrec y and VIH can eb coem interlinek d
and the prevention o f om thert- o-child and of r am n y C , VIHLA& this em ans the y
transim ssion is eb ing heralded as a ek ep part o f thesm elves a secret.
gloab l triupm h , these n� dings clearl y
VIH ream ins highl y stigam tised and
shoew d that VIHLA had eb en overlooek d.
of r am n y VIH positive people there is
dA olescence is the transition rf o m rf euq entl y a ef ar o f other people n� ding
childhood to adulthood and a tiem out . hT is can ub ild a negative epx erience
hw en the child om ves rf o m dependence o f having , VIH as it eb coem s vieew d as
toaw rds greater independence . tA this shaem uf l , epm hasising die� rence . hT ese
tiem children eb gin to gain a sense o f negative associations can eb internalised ,
autono ym and a desire to estalb ish their and of r the adolescent hw o is struggling
Adolescents Living with HIV:
Developing and Strengthening Care and Support Services