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Adolescents Living with HIV PDF

148 Pages·2016·4.59 MB·English
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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

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