01 Январь 2016
Adolescents Living with HIV
https://www.unicef.org/eca/adolescents-living-hiv
unite for children Adolescents Living with HIV: Developing and Strengthening Care and Support Services Adolescents Living with HIV: Commissioned by the UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States (UNICEF RO CEECIS) The opinions expressed in this publication are those of the contributors, and do not necessarily reflect the policies or views of UNICEF. 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 territory or of its authorities or the 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 Office 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 Office for CEECISHIV Section Palais des NationsCH 1211 Geneva 10Switzerland Copyright: 2016 United Nations Childrens Fund (UNICEF) Adolescents Living with HIV: Commissioned by the UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States (UNICEF RO CEECIS) Developing and Strengthening Care and Support Services unite for children Acknowledgements This handbook was written by consultants Magda Conway and Amanda Ely from the UK Childrens HIV Association (CHIVA) working in consultation with a number of partners and collaborators. The authors would like to thank Nina Ferencic, Ruslan Malyuta, Marie-Christine Belgharbi in UNICEF CEE/CIS Regional office for their trust and support with this work. They would like to thank their colleagues from health and social care in the UK who have generously given their time and expertise to support the development of this resource. Special thanks to: Dr Caroline Foster, Paediatric Consultant (Imperial College Healthcare NHS Trust); Susan McDonald, HIV Clinical Nurse Specialist (Imperial College Healthcare NHS Trust); Dr Tomas Campbell, Clinical Psychologist; Jill Hellings, Children and Families Social Worker (Barnardos); Sarah Lennox, Children and Families Social Worker (Barnardos); Sheila Donaghy, Paediatric HIV Clinical Nurse Specialist (St. Georges University Hospital) and Michelle Overton, support worker (Faith in People). Many thanks to colleagues and contributors who reviewed and provided valuable comments to the online draft publication, especially Dr. Nadia L. Dowshen (The Childrens Hospital of Philadelphia), Sara Paparini (London School of Hygiene and Tropical Medicine), Nisso Kasymova and Victoria Lozyuk from the (UNICEF country offices in Tajikistan and Belarus). Thank you to the young adults from UK who shared their experiences of growing up with HIV on the videos, and those that attend the Barnardos support service in Manchester for participating in group scenes. Special thanks goes to the all the HIV positive children and adolescents we have met over the years, who have shared their views and experiences and had a profound effect on the way we approach our work. FOREWORD In 2015, an estimated two million adolescents (10-19 year olds) were living with HIV worldwide and every hour an estimated 26 adolescents were newly infected with HIV. Adolescents living with HIV have mostly the same dreams and hopes as all other adolescents. Although they often face a number of health challenges in their day-to-day lives, many of the issues faced by adolescents living with HIV are linked to broader psycho-social aspects of their lives. In many ways, their experience of living with HIV provides the best guidance on how to support them to realize their rights and their full potential. The continuing high rates of new HIV infections and growing AIDS mortality among adolescents suggests that a change in adolescent programming is required. The voices and concerns of adolescents and young people need to be heard by care providers. Youth-centred and youth-led approaches that engage young people in the planning, implementation and evaluation of programmes are needed. Policy makers should put more effort into understanding the distinctiveness of adolescence in the context of HIV and make longer term commitments to funding and programme support. There is an increased need for capacity building and trained staff. The All In initiative launched by UNICEF and partners to end adolescent AIDS provides a platform for dialogue with young people, policy makers, care providers, community leaders and other stakeholders for action supporting adolescents. This handbook, with inputs from leading experts who have trained hundreds of professionals, provides indispensable tools for strengthening the management and care of adolescents living with HIV. Clinicians and social workers are provided with step by step guidance on how to work with adolescents and parents and increase their skills-sets to help them engage with and retain adolescents living with HIV in support services. It describes the challenges of working with families and care givers, promotes holistic models of child-centered assessment and practice, communication with families and children, with a focus on naming HIV, promoting adherence to treatment and ongoing conversations and supportive dialogue involving HIV positive adolescents as partners and leaders in their own care. Designed for optimal learning, the handbook allows to choose written, oral, visual, individual, and group strategies that best suit different learning styles. This handbook is about adolescents and it is for professionals who work with them. It is meant to be a living document that adapts as new information and evidence emerges and it hopes to support professionals to build their confidence, skills and better connections with adolescents living with HIV. UNICEF HIV Team Definitions 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 Childrens HIV Association for the UK & Ireland C&ALHIV Children and adolescents living with HIV UNICEF United Nations Childrens Fund UNCRC United Nations Convention on the Rights of the Child WHO World Health Organization 7 Adolescents Living with HIV:Developing and Strengthening Care and Support Services CONTENTS INTRODUCTION..................................................................................................................................9 The global context ............................................................................................................................9 Adolescents and HIV ........................................................................................................................10 SECTION ONE: CLINICAL ISSUES FOR ALHIV ............................................................................13 1.1 The brain and neurocognitive function ...................................................................13 1.2 Adherence ..........................................................................................................................14 1.3 Relationships and sexual health education ............................................................15 1.4 Onward disclosure of HIV .............................................................................................16 1.5 Transition to adult care ..................................................................................................18 SECTION TWO: THE PSYCHOSOCIAL NEEDS OF C&ALHIV ..................................................19 2.1 Growing up with HIV .......................................................................................................20 2.2 Managing HIV during adolescence ...........................................................................25 2.3 HIV and the family context ...........................................................................................33 SECTION THREE: VULNERABLE ADOLESCENTS WITH BEHAVIOURALLY ACQUIRED HIV ..................................................................................................36 3.1 Insecurely housed or living on the streets ..............................................................37 3.2 Sexually exploited ALHIV and involved in transactional sex ............................38 3.3 ALHIV who misuse drug and/or alcohol ..................................................................39 3.4 Adolescent men who have sex with men (AMSM)...............................................42 3.5 Engaging with health and managing HIV ...............................................................42 3.6 Ensuring inclusion of hard-to-reach groups ..........................................................44 SECTION FOUR: APPROACHES TO PRACTICE AND POLICIES .............................................45 4.1 Communication ................................................................................................................46 4.2 Talking to children about their HIV diagnosis ........................................................47 4.3 Confidentiality ...................................................................................................................51 4.4 Safeguarding children and child protection ..........................................................52 4.5 Managing behaviour ......................................................................................................55 4.6 Ensuring equality and inclusion .................................................................................58 8 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 4.7 One-to-one work ..............................................................................................................59 4.8 Group work .........................................................................................................................61 4.9 General practice points ..................................................................................................63 SECTION FIVE: EXAMPLES OF UK PRACTICE ............................................................................67 5.1 Peer support groups .......................................................................................................67 5.2 Residential interventions ..............................................................................................68 5.3 Occasional sessions attached to clinics....................................................................70 5.4 Therapeutic creative activities .....................................................................................70 5.5 Advocacy and influencing policy ...............................................................................71 5.6 On-line activities ...............................................................................................................72 5.7 Consultation with ALHIV ...............................................................................................73 REFERENCES ........................................................................................................................................ 75 APPENDIX ONE: Activity sheets to use when working with C&ALHIV ...........................77 APPENDIX TWO: Further reading.................................................................................................131 APPENDIX THREE: Maslows Hierarchy of Needs ....................................................................133 APPENDIX FOUR: Four principles of motivational interviewing ......................................135 APPENDIX FIVE: Policy documents and practice tools.........................................................136 9 Adolescents Living with HIV:Developing and Strengthening Care and Support Services INTRODUCTIONThe global context This handbook has been written for practitioners working directly with C&ALHIV and for policy makers and management to help develop services and protocols. To that end, it includes policy and practice guidance for the development of services, practice models and practical examples. The global experience of HIV offers many shared elements and this handbook reflects these, setting out practical guidance and tools that can be used in different settings. Commissioned by UNICEF Regional Office for CEE/CIS as part of a wider project to assist the development of support provision for C&ALHIV in that region, this handbook has been produced by experts from the UK who have worked with children, adolescents and families living with HIV for almost two decades. This resource aims to: Share knowledge and learning from practice developments in the UK that can be useful in a global context Ensure practitioners have a broad understanding of the psychological and social impacts of HIV on childhood and adolescence Promote the development of support that responds to the holistic needs of the child and adolescent Promote professional responses to reduce the impact of HIV stigma on children and adolescents. The handbook promotes multi-disciplinary working as the best approach to addressing the physical, psychological and social impacts of HIV. A robust partnership between health and social care services ensures a collaborative approach, where a flow of communication between practitioners exists and services are working together to meet the needs of the child, adolescent or family. It also acknowledges throughout that HIV disproportionately affects more vulnerable social groups and that this should be reflected in the practice that is developed. 10 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Adolescents and HIV There are approximately 1.2 billion adolescents in the world, over 80% of whom live in the developing world and an estimated 2.1 million adolescents were living with HIV in 2012 (UNAIDS, 2013). [1] In 2014, the WHO produced Health for the worlds adolescents: A second chance in the second decade [2] which stated that over the last decade, HIV had become one of the biggest killers of the worlds adolescents, second only to road traffic accidents. As global HIV rates decline and the prevention of mother-to-child transmission is being heralded as a global triumph, these findings clearly showed that ALHIV had been overlooked. Adolescence is the transition from childhood to adulthood and a time when the child moves from dependence towards greater independence. At this time children begin to gain a sense of autonomy and a desire to establish their individual identity. Friendships and the peer group, and fitting in with peers, can become increasingly important. Adolescence is known as a time of risk taking and experimentation. It is typical for an HIV diagnosis to be surrounded with secrecy for many groups of people who become infected. For children and adolescents who have grown up with HIV, HIV is closely linked to their sense of who they are, as it has always been a part of them. As such, secrecy and HIV can become interlinked and for many C&ALHIV, this means they keep part of themselves a secret. HIV remains highly stigmatised and for many HIV positive people there is frequently a fear of other people finding out. This can build a negative experience of having HIV, as it becomes viewed as shameful, emphasising difference. These negative associations can be internalised, and for the adolescent who is struggling UNICEF/NYHQ/2006-1329/C. Versiani 11 Adolescents Living with HIV:Developing and Strengthening Care and Support Services to work out who they are, the negative social responses to HIV can lead to a profound experience of self-stigma. This can reinforce feelings of difference, isolation (particularly from peers) and being of less worth than others. Poor adherence and engagement in clinical care during adolescence is normal for all health conditions. The common perception of HIV being associated with an imminent death and limiting opportunities can lead to ALHIV becoming fatalistic and so their risk taking behaviour may be seen as more extreme than their HIV negative peers. ALHIV often experience low self-esteem and struggle to see a future for themselves. But adolescence is also a time of opportunity and creativity and it is important to remember that adolescence is a transition period that may be turbulent, but it will end. The UN Convention on the Rights of the Child (UNCRC) The UNCRC is referred to throughout this resource. It was produced in 1989 and to date has been ratified by 192 countries (although some countries have placed reservations on some articles). The UNCRC is the basis for child-centred and child rights approaches. This Convention sets out the basic rights of children under 18 years without exception or discrimination of any kind, stipulating that the best interests of the child must be the primary consideration in all matters affecting children (Article 3); that childrens survival and development must be ensured (Article 6); and that children have the right to participate in decisions that affect them (Article 12). Within the context of children with health conditions, the UNCRC offers certain articles that are particularly pertinent for C&ALHIV: Every child should have access to information and material from a diversity of national and international sources, especially those aimed at the promotion of his or her social, spiritual, and moral well being and physical and mental health (Article 17) States parties recognise the rights of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States parties shall strive to ensure that no child is deprived of his or her right of access to such healthcare services (Article 24). 12 Adolescents Living with HIV:Developing and Strengthening Care and Support Services WHO guidelines for C&ALHIV This handbook has been influenced by practice experience and research and is closely linked with some key WHO publications. WHO (2011) HIV disclosure counselling for children up to 12 years. This guideline presents research which concludes that childrens health and well-being is supported when they have access to open conversations about their health and where HIV is named to them. The guidelines recommendations state that, children of school age should be told their HIV positive status: younger children should be told incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure [3]. This handbook upholds this recommendation, promoting C&ALHIV having full knowledge about their HIV status, which then enables work to take place to support them living well and challenges wider stigma towards HIV. WHO (2013) HIV and Adolescents; Guidance for HIV testing and counselling and care for adolescents living with HIV. This guideline considers operational approaches and different options of response to the needs of adolescents with HIV. It provides a range of practice examples which illustrate different responses to the needs of adolescents with HIV, and offers practice guidance. This handbook sets out to provide support in meeting the key recommendations from this WHO (2013) guideline, that: Adolescents should be counselled about the potential benefits and risks of disclosure of their HIV status to others and empowered and supported to determine if, when, how and to whom to disclose Community-based approaches can improve treatment adherence and retention in care of adolescents living with HIV Training of health-care workers can contribute to treatment adherence and improvement in retention in care of adolescents living with HIV [4]. Section One has been written by Dr Caroline Foster and offers a medical perspective, setting out the health needs of ALHIV. Section Two explores in detail different psychosocial impacts on C&ALHIV, to support an in-depth understanding of the lives of these children. Section Three looks specifically at those adolescents who acquire HIV behaviourally. Section Four sets out child-centred HIV specific approaches to developing practice and politics. Finally, Section Four offers examples of peer support group work from the UK. The appendices include numerous examples of activities that have been run with C&ALHIV, to explore HIV specific issues in peer groups and one-to-one sessions with workers. 13 Adolescents Living with HIV:Developing and Strengthening Care and Support Services SECTION ONE: CLINICAL ISSUES FOR ALHIVDr Caroline Foster Consultant in Adolescent Infectious Diseases/HIV Watch video: The impact of psychosocial needs on health provision - http://vimeo.com/112460123 (password: chiva) In regions of the world where ART is available, perinatally acquired HIV-1 infection is now a chronic disease of childhood [5]. High uptake of antenatal testing, reduced mother-to-child transmission rates from diagnosed women, improved survival following ART and later age at presentation among those born abroad [6] mean that the average age of perinatally infected children in many European cohorts is now over 13 years. Increasing numbers of ALHIV are therefore transitioning from paediatric to adult services and join the large numbers of ALHIV infected through sexual transmission [7]. This means that children are surviving into adulthood, yet the process of growing up with HIV can present clinical and psychological complications, not all of which are directly HIV related. Some key clinical issues faced by this group are outlined below. 1.1 The brain and neurocognitive function Whilst the importance of brain growth in infancy is well established, there is increasing recognition of the enormous changes that occur in the adolescent brain. At 11-12 years, brain function slows in preparation for increased synaptic proliferation (frontal lobe) then pruning and strengthening of neural pathways that continues into our mid-twenties. During adolescence, the thalamic drive UNICEF 2014/S. Noorani 14 Adolescents Living with HIV:Developing and Strengthening Care and Support Services for reward may be mismatched with later development of executive functioning reasoning and may explain why risk taking behaviour is much more common in adolescents. Whilst ART has had a remarkable impact on long-term survival for children born with HIV, the long-term effects of living with HIV and prolonged exposure to antiretroviral therapy throughout post-natal growth and development are becoming apparent. Data is now emerging regarding neurocognitive development, mental health and cardiovascular and bone toxicity, the longer-term outcomes of which remain uncertain. Perinatally acquired HIV occurs in the context of an immature brain with human brain development typically continuing into the third decade of a persons life. Without antiretroviral therapy, around 10% of infected infants present with progressive severe HIV encephalopathy (damage to the brain), which although arrested by ART, leaves residual cognitive and motor deficits with significant impact on independent mobility and daily living. Increased rates of expressive language delay and behavioural difficulties are reported in preschool children and more subtle educational difficulties become more apparent in secondary school aged children. Whilst mental health issues are more common in adolescence when compared to earlier childhood in the general population, increased rates of psychological disorders and psychiatric diagnoses, most frequently anxiety and depressive disorders, are reported in ALHIV, impacting on quality of life and on adherence to ART [8]. 1.2 Adherence Adherence to antiretroviral therapy appears to be poorer during adolescence for all ALHIV, although a similar pattern is seen in other chronic diseases of childhood. ALHIV often face multiple barriers to adherence including structural barriers in fitting medication into complex patterns of daily life, low expectancy for outcome of antiretroviral therapy and mental health/substance abuse. The impact of HIV as a family disease means that some adolescents have suffered bereavement, losing parents and other family members to HIV, further impacting on health beliefs and adult support networks around adherence. Early patterns of adherence on initiating ART predict the long-term adherence of HIV positive children, which means that time spent by a multidisciplinary team in preparation and education prior to initiation of therapy, and switching regimens, including the use of peer mentors, counsellors and NGO support are extremely important. Adherence messages need to be frequently repeated as medication fatigue occurs and particular attention given during the period of transition from paediatric to adult services, a time often associated with poorer attendance and adherence to medication. 15 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Despite recent advances in co-formulations, smaller tablet sizes and multidisciplinary approaches to adherence, a small proportion of adolescents continue to either adhere very poorly or decline antiretroviral therapy despite severe immune suppression with its risk of opportunistic infection and death. Keeping this group engaged as they grow towards adulthood is extremely important, as those who choose not to, or are unable to take treatment, require ongoing support and education, including access to sexual health services to prevent onwards transmission to sexual partners and their offspring. This area is expanded further in Section Two: Managing HIV during adolescence. 1.3 Relationships and sexual health education The earlier discussions begin, relating to sex and relationships, the easier this is for the child, practitioner and parent/carer. Begin with an explanation of the physical and emotional changes that occur in boys and girls during puberty, emphasising that these are normal changes. In many countries sexual health education is part of the school curriculum, often occurring around the age of 12 years. However, the quality and retention of such information is extremely variable and ALHIV need specific information that is relevant for their unique situation. Encouraging the younger adolescent to have a small part of the consultation alone with the doctor/nurse supports these discussions. When they are familiar with this pattern of care, it allows opportunity for discussion, education and questions that adolescents may not wish to ask in front of their parent/carers, either because of embarrassment or because they worry about asking difficult questions that may upset their parent/carers. UNICEF/NYHQ2008-0572/A. Dean 16 Adolescents Living with HIV:Developing and Strengthening Care and Support Services Adolescents need simple, basic, clear, age-appropriate facts, explained in language they understand, given in small volumes and repeated frequently. Information should be generic; try to avoid making assumptions based on whether you think a young person is or is not sexually active we often know very little about their lives. Do not presume relationships are heterosexual; up to 10% of young people experience same sex relationships at some time and using the word partners until a young person has clarified their current sexual orientation avoids confusion. Consistent condom use should always be encouraged, with additional contraceptive methods discussed with adolescents. Recent research has shown that the risk of sexual transmission of HIV is substantially reduced where the HIV positive person has an undetectable viral load [9]. Typically suppressive ART reduces HIV viral loads in semen and cervico-vaginal fluid as well as plasma. However, occasional individuals have been shown to have detectable levels of HIV in genital secretions despite virological suppression in plasma, because of compartmentalisation of HIV within the genital tract. For this reason, and because a viral load reflects only one time point and other Sexually Transmitted Infections could be present, health professionals continue to recommend condom use with ALHIV. 1.4 Onward disclosure of HIV Whilst much attention has been paid to the process of naming HIV to a CLHIV, processes of supporting onward disclosure to family, friends and sexual partners have received less attention. However, as the perinatal cohort ages and much larger numbers of children enter adolescence, there is a need for UNICEF NYHQ2006-1478/G. Pirozzi 17 Adolescents Living with HIV:Developing and Strengthening Care and Support Services similarly robust processes to support them through onward disclosure. Many ALHIV have not disclosed their status to anyone and separate their life into compartments: their HIV life and their daily life. There is some evidence that self- disclosure may improve psychological wellbeing for some adolescents, which subsequently enhances their physical health, but there are also examples where outcomes have been less positive. Some adolescents want to disclose their status to close friends, relatives and to sexual partners. It may be helpful to talk through this process: the advantages (becoming closer, sharing, not living a double life), but also the potential disadvantages (rejection, anger, and wider disclosure of their status and possibly other family members). This is expanded further in Section Two: Managing HIV during adolescence. In some countries, transmitting HIV to your partner, even unintentionally, is a criminal offence and people have been prosecuted and received lengthy jail terms. Professionals need to be aware of the law in their own country so they can give sensitive, accurate guidance to ALHIV. It is important that these discussions empower the ALHIV with facts rather than fear. Talk through the detail simply and ask them to reflect back what they understand. If an ALHIV is going to travel, they will need to consider the legal position regarding onward transmission of HIV in the countries they visit. UNICEF/2014/S. Noorani 18 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 1.5 Transition to adult care Transition has been defined as: the planned purposeful process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems. Increasing numbers of perinatally infected ALHIV are entering adult care and the age at which this occurs varies markedly across the globe, from 12 years in parts of sub-Saharan Africa to 24 years in regions such as the US where there is dedicated adolescent/young adult services. With other chronic diseases, transition programmes have been shown to improve attendance, disease control, self-management and patient and carer satisfaction. Conversely, direct transfer to adult services has been associated with poorer attendance and adherence, resulting in increased disease-related mortality and morbidity. Thought and planning must go into this process to ensure the best outcomes for the adolescent and to ensure they remain engaged in care. See Appendix Two: Further Reading for resources relating to this. Conclusion Caring for ALHIV can be complex. HIV or the social situation the adolescent lives in can present difficult psychosocial issues that can impact on their engagement with health and how well they are able to self-care. There are worldwide examples of excellent support that provides a safe place for ALHIV who know their HIV diagnosis, to meet others and to share concerns. As the ALHIV often presents multiple non-health issues, multi-disciplinary teamwork is essential in providing a coherent package of care. Adolescence is a time of enormous change, much of it exciting although some challenges have to be negotiated. A chronic disease adds to the complexity of this period of life, and one that is stigmatising and sexually transmissible even more so. However, the success of ART in the last 15 years means that increasing numbers of children born with HIV have an optimistic long term future and require careful, coordinated, adolescent-centred multidisciplinary support to fulfil their potential as adults within society. Watch video: Developing youth-friendly HIV services - http://vimeo.com/112460122 (password: chiva) 19 Adolescents Living with HIV:Developing and Strengthening Care and Support Services SECTION TWO: THE PSYCHOSOCIAL NEEDS OF C&ALHIVThis section explores specific issues that HIV can present for children, adolescents and families. It focuses on the psychosocial impacts and support needs of C&ALHIV, and does not include access to health care and medication, which may be an issue in different contexts. For many C&ALHIV and their families, HIV is one of a multitude of issues they face, and at times the other issues - such as having sufficient food, housing, substance misuse, mental health problems - may be more critical. Wider social issues are not included in this section, but need to be acknowledged, and where possible addressed. A holistic approach should always be taken when supporting C&ALHIV, and these wider issues taken into account, as they will impact on all aspects of the childs life including engagement, adherence and health outcomes. Group and one-to-one activities that can be used to address some of these issues can be found in Appendix One. This section covers the following areas: 2.1 Growing up with HIV Talking openly about HIV Children fully understanding HIV Parental bereavement Children growing up without their biological parents. UNICEF NYHQ2006-1327/C. Versiani 20 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 2.2 Managing HIV during adolescence Isolation Stigma and self-stigma Taking medicine Sex and sexuality Talking to others about HIV Having no home. 2.3 HIV and the family context How HIV was acquired The family Caring responsibilities for parents and/or siblings Drug use in the family. 2.1 Growing up with HIV Talking openly about HIV This area is covered in some detail in Section Three, but it is important to examine the role of professionals in addressing this issue. At the start of the HIV epidemic, when children were not expected to survive into childhood, not telling them their diagnosis was seen to protect them. The advent of ART and HIV becoming a manageable chronic health condition means the prognosis for children born with HIV is hugely improved, with the expectation that with access to ART, children can live long into adulthood. There have also been developments in understanding childrens rights and having this approach embedded in professional responses to children in settings such as health and education. This has generally lead to child-centred approaches to caring for children with health conditions, involving them in decisions about their own health care, taking their views into account and seeing them as competent in doing this. Children who are given clear, simple information about their health are seen to have less fears, increased understanding and improved outcomes. With respect to the above, HIV is far behind other health conditions. It is not uncommon for C&ALHIV not to be told 21 Adolescents Living with HIV:Developing and Strengthening Care and Support Services HIV is the virus they live with, or that they are only given partial information. When HIV is eventually disclosed to them, it can remain an area of some anxiety and concern. It is critical to consider how children are engaged in conversations about their HIV as this will have a significant impact on how they understand and accept their diagnosis. Professionals have an important role to play in addressing the stigma that surrounds HIV through the active encouragement of, and engagement in, open conversations about HIV. Children fully understanding HIV Having a clear and accurate understanding of HIV is essential to empowering C&ALHIV to live well and develop a good relationship with their medical condition. This needs to include a clear understanding of HIV as a virus, how it replicates and how it compromises their immune system. This knowledge will also mean they understand how their medication works and how to keep themselves well. Equipping C&ALHIV with this knowledge will empower them, giving them control and responsibility over their own health. Although HIV may be explained to C&ALHIV in a clinical setting, it is important that there are ongoing opportunities for conversations in other settings. Exploring the information in different ways offers multiple opportunities to ask questions and express any confusion or uncertainty. Clinics can feel like formal spaces for C&ALHIV and some may find it more difficult to ask questions in this setting. Experience of work with this group has shown that C&ALHIV respond well to receiving this information in youth- UNICEF NYHQ2004-0707/G. Pirozzi 22 Adolescents Living with HIV:Developing and Strengthening Care and Support Services friendly, engaging ways. Repeating information is important as often a child will take away the part of the information that is relevant to them at that time, so revisiting information regularly in different ways will provoke further discussion and debate. Active and participatory approaches to learning (as opposed to presentations of information) are also known to be particularly effective with children. Peer support sessions are good places where C&ALHIV can safely explore issues and ask questions. Never presume knowledge and understanding, and always get the child or adolescent to reflect back what you have been talking about to ensure they have properly understood. Parental bereavement One of the most significant things that can happen to a child is the death of a parent during childhood. This loss has a serious impact on any child, but in relation to HIV, it presents additional complexities. If the parent has died from AIDS related illnesses, the C&ALHIV could believe they will experience the same outcome. If the parent has died before the child was told their HIV status, when HIV is finally named they will be learning the truth about their parents death and again potentially relate this to what they perceive to be their imminent death. This link between HIV and death can bring a sense of fear and anxiety, compounding feelings around being lied to and possibly having to keep this family secret from siblings and other family members. When supporting C&ALHIV, it is important to carry out holistic needs assessments (see Appendix Five). This will enable bereavement to be highlighted and will assist an understanding of the impact on the child at that time and in the future. Open and honest conversations can help, offering the space to talk and ask questions as and when the child needs to. Group work can support the ALHIV to find the language to express themselves and be able to say how the death of their parent has affected them. It also offers the opportunity to share these experiences with others who have had a parent die, acknowledging that they are not alone in this experience. Children growing up without biological parents It is not uncommon for C&ALHIV to grow up in environments away from their biological parents, such as institutions, foster homes, child-headed households or living with extended family members. This can be due to the bereavement of parents; abandonment; mental health or drug use making the parent feel unable to care for the child; abuse meaning the home is not safe; or the issue of poverty. All children become additionally vulnerable due to the loss of parental care. It is understood that a critical feature of a childs social and emotional development is the opportunity to form attachments with a significant caregiver who is warm, sensitive and responsive. There is much psychological research on the impact of severed or absent relationships of attachment for children (see Appendix Two: Further Reading). 23 Adolescents Living with HIV:Developing and Strengthening Care and Support Services An HIV diagnosis in childhood can have a negative impact on a childs sense of self-esteem and self-worth. It can challenge a childs sense of hope about their future, their life, and relationship opportunities. Work with C&ALHIV who are growing up away from their biological parents, and particularly those who are living in institutions for whom a significant attachment relationship is more problematic due to the group care environment, will require special attention. They may face the emotional vulnerability and psychological impact of growing up without a secure attachment relationship with a parent, and the impact of a stigmatised illness which they may have limited understanding of. It is important to understand the difficulties they could face in forming trusting and secure relationships with those caring for them, and acknowledge this in working practice. Approaches to one-to-one support and group work should consider activities to build self-esteem, help C&ALHIV to feel empowered and create a sense of hope for the future. Consideration also needs to be given to how to integrate C&ALHIV with their HIV positive peers who do live with their biological parents and consider ways to challenge any negative attitudes within the peer group (if this should occur), stressing the profound shared experience of growing up with HIV. UNICEF/2014/S. Noorani 25 Adolescents Living with HIV:Developing and Strengthening Care and Support Services 2.2 Managing HIV during adolescence Isolation Many ALHIV describe the impact of HIV making them feeling isolated and different. Even in high prevalence settings, the stigma that surrounds HIV and the lack of people living openly means that ALHIV can feel like they are the only one. This sense of isolation and feeling alone in managing HIV can impact profoundly on psychological and emotional well-being. This is why it is so important to have open conversations about HIV with CLHIV at a young age normalising HIV before societal views can influence the child - and to continue these conversations and link them with their HIV positive peers as soon as possible. In low prevalence contexts, some C&ALHIV will be geographically isolated, which can present challenges to accessing their HIV positive peers. Direct outreach work and using residential interventions has been shown to be successful in overcoming this (see Section Five: Residential Interventions). Linking adolescents through online communication and social media is an option, but face-to-face contact is by far the most successful model. There may be financial barriers such as travel or accommodation costs to overcome and preliminary work may need to be undertaken with parent/carers or children if there is initial resistance or fear, but the impact of peer contact on ALHIV can be life changing. The authors of this handbook have worked with many geographically isolated ALHIV and their feedback following contact with their peers demonstrates immense relief in feeling that they are not alone, building emotional resilience and reducing self-stigma. Stigma and self-stigmaWatch video: Self-stigma - http://vimeo.com/112427513 (password: chiva) Stigma devalues people and generates shame. It blames and punishes certain people or groups to detract from the fact that everyone is at risk. Stigma focuses on existing prejudices and further marginalises people. The stigma attached to HIV comes from it being associated with sex, disease and death, and with illegal or culturally taboos practices. The real and perceived stigma of having HIV can lead to feelings of isolation and difference and experiences of discrimination and abuse. Stigma is also harmful to individuals because it can lead to feelings of guilt or shame. In this way, stigma can become internalised and lead to what is referred to as self-stigma, where the individual has negative beliefs about HIV and therefore negative beliefs about themselves. Self-stigma can result in denial of HIV, non-adherence, and refusal to talk about HIV. Research carried out into self-stigma states: UNICEF/2014/S. Noorani UNICEF NYHQ2004-1159/R. LeMoyne 27 Adolescents Living with HIV:Developing and Strengthening Care and Support Services It leads to fear of disclosure, which leads to social isolation, a life of no sex or anonymous sex that avoids disclosure, negative body image, feelings of hopelessness [10]. Many factors can influence the development of self-stigma: the views of the community a person lives in; how and when they were told they have HIV; and their experiences of HIV (such as abandonment or bereavement). For practitioners to understand the self-stigma of ALHIV it is important to understand the holistic experiences of the child. Working to reduce self-stigma is ultimately going to require a person changing their self-beliefs. Activities and discussion that support ALHIV to explore their self-perception, future aspirations and how they define their identity in relation to HIV, will start to work towards this change. Professionals should take a questioning approach to those beliefs that are self-stigmatising, in an effort to challenge and change them. Taking medicinesWatch video: Adherence - http://vimeo.com/112425742 (password: chiva) The development and advancement of ART means that HIV is now defined as a chronic manageable health condition. However, ART must be taken regularly and if doses are missed, the virus can mutate and the medicines no longer work. Although there is a number of different ART available (and this will vary in different settings) there are a limited number of combinations and poor adherence can lead to multi-drug resistance, morbidity and mortality. Adherence can be a complex psychological issue and solutions can be challenging. Ensuring that C&ALHIV have a good understanding about HIV, how medications help to control it and a proper understanding of what side- UNICEF NYHQ2004-1159/R. LeMoyne UNICEF 2014/S. Noorani 28 Adolescents Living with HIV:Developing and Strengthening Care and Support Services effects are and how they might manifest on different regimes, will support adherence. For C&ALHIV, adherence is a family/home issue and where possible, adherence support should be given to the family when the child is young, developing good models of adherence from an early age. As Dr Caroline Foster sets out in Section One, poor adherence is not unique to HIV and adherence patterns are developed in childhood. To that end, it is important to work with a family around adherence as soon as possible in an attempt to set up good models when a child is young. In its simplest form, adherence support can be divided into two necessary approaches: Approach one: Practical support C&ALHIV and their parent/carers may need practical tools to support them in remembering to take their medicine. This can be simple charts, pillboxes, alarms, mobile phone apps, etc. These techniques help those who struggle to establish daily routines with medication. Approach two: Psychological and emotional support The more complex area involves ALHIV who still feel unable to take medicine despite knowing all the facts about how important this is. This is not uncommon and it is important to understand how and why this situation occurs, as well as seeking to develop ways to work with the adolescent to explore how they can manage this. There are multiple reasons why ALHIV do not take their medication, including: Feeling they have some control That the medication is a daily reminder that they have HIV They feel well and the side effects make them feel unwell They feel that they do not have a future, and see no point in taking medicine Wanting to feel normal and be the same as their HIV negative peers. HIV is highly stigmatised and understanding self-stigma is significant to an understanding of poor adherence. Reflecting on ALHIVs early childhood experiences of HIV, attitudes to medication in their home and their experiences in healthcare will support practitioners understanding and ALHIV to see these links. It may be that there are other significant events or experiences not connected with HIV that impact on adherence, such as experiences of abuse, abandonment, parental drug-use, adolescents using drugs, caring responsibilities, issues at school and within friendship circles. 29 Adolescents Living with HIV:Developing and Strengthening Care and Support Services One-to-one and group work will offer the opportunity to explore these wider experiences. It is important to approach the adolescent holistically, to show an interest in them as a person and not simply in their HIV. Studies in the UK have shown that Motivational Interviewing has had some success in addressing adolescents with extremely poor adherence. [11] If an ALHIV is not taking medication and no intervention at that time seems to be working, focus should be on positive risk management, which means accepting the ALHIV is not taking their medication and supporting them to prevent onward transmission through safer sex or injecting practices during this time. Above all else, it is important that the ALHIV is not judged for their decisions relating to medication, that their choices are accepted and they are kept engaged within healthcare. Appendix One
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